Medical Error Interviews

When Laura Johnson's father Bill, a healthy and active senior, went for a simple medical procedure, Laura's gut instincts told her to miss work and go with him to keep him safe.  But Bill told her he had a friend accompanying him and assured Laura he would be fine because “how bad could they mess this up”. Tragically, Laura's instincts were right. Her father was not safe in that hospital under their care. And the doctor responsible for Bill's care, is the daughter of a doctor who is imprisoned for medical fraud. The medical apple does not fall far from the criminal tree. Laura shares what happened to her father, how he was blamed when the procedure went wrong, and how staggering levels of medical incompetence lead to his early death. Connect with Laura Johnson: https://m.facebook.com/laura.g.johnson.7 Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim's surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario's Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Medical error and harm can take many forms and occurs in almost every medical context, except perhaps during autopsies.  So when a medical error occurs during a joyous event like childbirth, it can not only impact the immediate experience, but may also cause lifelong suffering and disability. This is what happened to Carol Sunnucks when she went to the hospital to give birth to her son Kai. It was a hard labour and they had to use a suction device to pull Kai out -- but the doctor failed to check Carol for internal damage after that difficult procedure. This would prove to be catastrophic to Carol's health and future.  To make matters exponentially worse, the medical error and the damage it was causing was not detected for so long that any hope of Carol recovering her normal bodily functions is seemingly gone.   Layered on top of that is the betrayal Carol subsequently experienced by both the health care and legal systems.  Carol and I talk about her experiences and what she's doing to make meaning out of someone else's failure to do their job. Connect with Carol Sunnucks Facebook: https://www.facebook.com/carol.sunnucks.92 Twitter: https://twitter.com/kaibaby28 Email: CarolSunnucks@hotmail.co.uk

Ashanti Daniel is one of those people who knew their career destiny as a child - and then made it come to fruition. As a nurse, Ashanti had the inside view of how the health care system operates - so when she got very sick and  was hospitalized multiple times, she thought that being a health care worker would afford her legitimacy in the eyes of her medical peers.   But Ashanti quickly discovered that being a black woman with ‘normal’ results from routine medical tests, trumped years of working as a health care professional. While medical gaslighting is endemic throughout the health care system, it is especially evident if you have a disease that has no biomarkers, and you are a female of colour.  Ask any one with a complex chronic illness, and you will most assuredly hear a story of doctors denying the patient experience of their own body, and instead attribute physical symptoms to psychological causes. And this is based on nothing except the doctor’s biases, prejudices and ego. For black female patients with a complex disease, it could be argued that the operationalized ‘standard of care’ is gaslighting.  As Ashanti experienced, a doctor can write whatever they want about a patient in the medical records. It doesn’t have to be true. The amount of power doctors wield over people is the power of life and death. At their whim, they can deny testing, ignore a diagnosis, and label a person as mentally ill. In some jurisdictions, doctors can have a person committed to a mental hospital against their will. The medical system is a pathological mess, driven and controlled by a god complex culture. Until doctors change their culture, there will continue to be -- as Long COVID patients are discovering en masse -- many doctors that inflict great harm by disbelieving patients. Connect with Ashanti Daniel, RN Instagram: @AshantiRN Twitter: @AshantiRN Linktr.ee: www.Linktr.ee/AshantiRN Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

In the early hours of the 28th of July 2016, Colette McCulloch was hit and killed by a bus. Eighteen hours earlier Colette had walked out of the specialist care facility for autistic adults where she was being treated. Throughout Colette’s short life, her parents Andy and Amanda, sought out medical professionals to try to explain and ease their younger daughter’s extraordinary mind. Since Colette’s death Andy and Amanda have been fighting various medical and legal authorities to uncover the failings in her care and treatment.  In our interview, author Andy McCulloch tells the story of his daughter's life and untimely death: the years in which her autism went undiagnosed, her lifelong battle with eating disorders and the lack of support for her complex needs. In spite of these challenges, Colette forged a path to university to pursue her passion for literature and to have her writing published. Over the past year Andy and Amanda have written a book about their family’s experience with the health care system titled “Why Can’t You Hear Me?” - and it includes some of Colette’s writing, where she articulates her experiences grappling with a world forever at odds with her. With this book, Colette’s dream of having her words published has come to fruition. Colette's story is ultimately a call to action and a message of hope for a future in which autistic people will be better understood, appropriately cared for, and able to flourish. Connect with Andy McCulloch: Twitter: @AndyMcCulloch5 Buy his book: Why Can’t You Hear Me? Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Implanting plastic mesh inside our bodies doesn’t sound like a smart thing -- and it wouldn’t have happened to Michelle Hedgcoth if a previous medical error hadn’t damaged her body. Michelle was a healthy and happy career woman when she gave birth - but the doctor, who had given Michelle an episiotomy, failed to sew her back up after the baby was delivered. This failure would have devastating consequences on every aspect of Michelle’s life. In an effort to ‘fix’ their mistake, doctors performed a surgery to implant plastic mesh into Michelle’s abdomen. Plastic mesh that can disintegrate releasing toxic and sickening poisons -- plastic mesh that can twist, break apart and pierce internal organs -- plastic mesh that can attach itself to organs so that it can never be detached. In this interview, Michelle tells us what happened to her in the health care system, the impact it has had on her body, her health, her family, her career, and what she is doing today to make others aware of the dangers of mesh implants. Connect with Michelle Hedgcoth: Twitter: @WCmeshfighter Facebook: WestCoastMeshFighter  https://www.facebook.com/Westcoastmeshfighter Instagram:  WestCoastMeshFighter  https://www.instagram.com/westcoastmeshfighter/?hl=en Website:  http://WestCoastMeshFighter.com Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Like the vast majority of people, you have probably taken an antibiotic at some point in your life.  And it probably helped you. However, a class of antibiotics known as fluoroquinolones can cause permanent and severe damage -- this is known as fluoroquinolone toxicity, or, in the US, fluoroquinolone induced disability - FQID. This is a global health care problem that few know about -- or are warned about by their doctor. Why is that? In this episode, I chat with someone who has insight not only into the dynamics that keep this medical harm mostly hidden from the public, but has also been profoundly impacted by fluoroquinolones. Marc from Germany is just one of 10s of 1000s of people around the planet who have been injured by these antibiotics. Marc shares how he finally connected the dots between his declining health and repeated use of fluoroquinolones, and what he does to help alleviate the toxicity symptoms so that he has an improved quality of life.  The statistics of harm from fluoroquinolone toxicity are vastly under reported because the toxicity symptoms may not noticeably manifest until days, weeks or months after the antibiotic use. This makes it difficult for those affected to identify the cause of their symptoms, and a challenge for physicians to tease out….or even acknowledge. Symptoms include tendon rupture, aortic rupture, hypoglycemia, nerve damage, mental health issues and -- surprisingly to me -- a dysfunctional response to exercise known as post exertional malaise, the hallmark symptom of the neurological disease ME, or myalgic encephalomyelitis. As you will hear, Marc postulates that some people diagnosed with ME may have fluoroquinolone toxicity. Is he connecting more dots, that the medical system is missing? Connect with Marc: Twitter: @FQID2 Marc’s Doctor is Dr. Stefan Pieper https://praxisdrpieper.de Dr Pieper released a "Springer essential" at scientific publisher Springer in German with basic facts about diagnosis and possible treatment regarding FQID (Fluoroquinolone Induced Disability) https://springer.com Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

Multiple award winning author Marcus Sedgwick is best known for his popular fiction books, but his experiences with deeply entrenched medical gaslighting inspired his new book titled “All In Your Head - What happens when your doctor doesn’t believe you.” Marcus describes how he got sick with flu like symptoms...but they never went away. Marcus was thrown into a world he did not even know existed, a world where very sick people are disbelieved and often belittled by physicians. A world Marcus is also seeing unfold for the millions of Long COVID patients around the world, where their physical symptoms are often dismissed as psychological. With Long COVID we are witnessing millions of people being medically traumatized by global gaslighting.  Marcus and I discuss the immense pressure physicians are under, from the government and insurance companies, and why the medical system has been set up so that it is in the physician’s best interest to say ‘it’s in your head’ rather than in your body. #FollowTheMoney Connect with Marcus Sedgwick www.marcussedgwick.com ‘All In Your Head’ preview:  https://marcussedgwick.com/all-in-your-head/ Twitter: @marcussedgwick  Instagram: @marcussedgwick Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When Alice Urbino was a young teenager she got the flu and never got better. Her mother - desperate for her daughter to recover - paid for what she thought was a legitimate treatment -- even though young Alice could plainly see the ‘lightning process’ was based on pseudoscience. Nevertheless, Alice was pressured to partake in a cult like atmosphere with absurd rituals that amounted to brain washing. Alice was made to believe that she chose to be sick, and that even expressing feelings of nausea or fatigue were signs that she wasn’t trying hard enough and that she had the wrong attitude and that’s why she was still sick. Not surprisingly, young Alice was brain washed and internalized the blame and shame and soon became depressed and started hating herself. For years, belief in this ‘treatment’ affected Alice’s mental health and belief in herself and the physical symptoms she experienced. In our interview, Alice tells us how she overcame the internalized gaslighting caused by the lightning process, and to warn us about what she learned about the lightning process’s infamous founder Phil Parker, who professes to have the “ability to step into other people’s bodies...to assist them in their healing”. Parker - who is often called out as a charlatan on social media - has a long history of financially preying on the sick, vulnerable and desperate. Link to Phil Parker’s old prototype page: https://t.co/VNjPRdxjjd?amp=1 Connect with Alice Urbino: twitter and instagram are both @aliceurbino Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Ryan Clark had it all. Successful career. Great relationships. Healthy body. When Ryan noticed a bit of hair loss, like many men, he took a common medication known as Propecia to promote hair growth.  Unbeknownst to Ryan, Propecia can cause post-finasteride syndrome - causing sexual, neurological, physical and cognitive adverse reactions - it is a condition with no known cure and few, if any, effective treatments.  In the ensuing years, Ryan’s body started to break down and unfamiliar and confusing symptoms manifested: anxiety, trouble sleeping, erectile dysfunction and memory problems.  But his doctors were not making the connection between Ryan’s symptoms and the hair growth medication -- even after Ryan developed testicular cancer -- very few physicians are even aware of post finasteride syndrome.  In our interview Ryan shares the heartbreaking losses he’s suffered to his health, his relationships and his career as a direct result of the medication -- and Ryan shares about how he’s finding meaning in helping and supporting other men who’ve had their lives ruined by a medication the health care system fails to recognize, let alone treat. Connect with Ryan Clark https://twitter.com/RyanCla64726007 https://www.facebook.com/ryan.clark.589583 https://www.propeciahelp.com/ Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

If a surgeon told you that they were going to implant plastic mesh around an organ -- perhaps your bladder or bowel -- and screw the ends into your pelvis and spine -- would you have that surgery? What if the surgeon also told you the plastic mesh may disintegrate and release toxins into your body causing multi system dysfunction -- and that the plastic may twist and puncture your organs or press against nerves causing suicidal level pain when you move -- would you have that surgery? What if the surgeon also told you that if you experience these symptoms --- that no doctor will have been educated to look for the signs of plastic mesh injury  --- that no doctor will believe you if you think the symptoms are caused by the plastic mesh --- that you will be gaslighted so often that the gaslighting becomes internalized -- would you have that surgery? What if the surgeon told you that the plastic mesh has an expiry date and that protects the manufacturer from medical negligence lawsuits --- and that the expiry date is not from the date of the implant, but from the date of manufacturing -- so the plastic mesh can sit on the shelf for many years before it gets implanted -- would you have that surgery? If a surgeon told you that plastic mesh may ruin your physical health, cause intractable pain, disable you from working or exercising or socializing so that you lose your career, your home and your future and quality of life may plummet -- would you have that surgery? Sally Maddocks was not informed of any of these possible outcomes when the doctor recommended surgery. And Sally is not alone in having her life irrevocably harmed by corporate profits over patient safety. But Sally is fighting back with a petition to raise awareness so others avoid potential harm, and to hold her government accountable for their actions. Connect with Sally Maddocks: https://twitter.com/maddocks_sally https://facebook.com/groups/2327576 https://facebook.com/groups/1567096 https://facebook.com/groups/117040 https://facebook.com/groups/2039629 https://facebook.com/groups/325473 Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When Dr Simon Breidert tried to discontinue use of the hair growth medication Finasteride, he experienced a myriad of very disturbing and disabling symptoms in multiple body systems. But the medical system doesn’t recognize Post Finasteride Syndrome and has labeled any one who says they experience those symptoms as hysterical. Dr Breidert was now confronted by his own profession’s deeply embedded medical bias. Simon was experiencing horrible physical symptoms, but the health care system had already decided his diagnosis is psychosomatic. Talk about major cognitive dissonance. Simon had to reconcile years of medical education that psychologizes everything it does not yet understand, with his own body’s experience. Simon and I talk about how his body broke down, his hellish health care journey and the strategies he employs to manage Post Finasteride Syndrome. Simon also shares what he now thinks of the medical system, psychiatry and psychosomatic medicine, and how he’s leveraging the trauma of serious illness and medical marginalization and gaslighting, into growth by founding the charity PFS Research. Connect with Dr Simon Breidert https://twitter.com/simonbreidert https://www.pfsresearch.org/ Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com   Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

It is an open secret that hospitals’ standard of practice is to deny, diminish or cover up their medical errors. When they occur, there is often immense pressure from hospital administrators on employees to conform to a narrative that protects the hospital. The employee may feel that their job and career are in jeopardy, and they may feel peer pressure to ‘not rock the boat’ and protect their health care colleagues. Nurse Shirley Barker found herself in exactly that pressure cooker when a police sheriff who was shot multiple times in a high profile shoot out ended up under Shirley’s care. Although seriously injured, the next day he was recovering and his family was in the waiting room while the doctor examined him. The physician asked Shirley to administer a medication, but she refused because of safety concerns. The physician himself then injected the medication -- and immediately the sheriff’s vital signs dropped and Shirley witnessed his death...by physician. In our interview Shirley shares the highly pressured experience of being a hospital’s employee and a key witness in a court case about a medical death in that hospital. Shirley also shares how her father’s death involved medical error and how these cumulative experiences have impacted her life’s path. Connect with Shirley Barker: Facebook.com/Wellness-Island Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Medicine is so messed up. It has been fatally bitten by its own dogma.  When singer-songwriter Dana Parish suddenly got very sick, she quickly had a correct diagnosis of Lyme disease and was given the standard antibiotic treatment. But Dana never fully recovered and eventually ended up in heart failure. Dana saw many top doctors in New York and they all missed the ongoing underlying infection that would lead to Dana’s heart failure. None of these physicians could wrap their heads around the idea that Dana had been under treated for Lyme disease and it was causing her impending death. Like other medically marginalized and discriminated diseases, chronic Lyme infection has been maligned and neglected by the very system that purports to provide medical care. This reflects the heart of the problem with our health care: entrenched discriminatory dogma in a closed system. Eventually Dana found Dr Steven Phillips, who was already an internationally renowned physician specializing in complex, chronic diseases when he became a patient himself. After nearly dying from his own mystery illness, he experienced firsthand the medical community’s ignorance about the pathogens that underlie a deep spectrum of serious conditions—from fibromyalgia, multiple sclerosis and myalgic encephalomyelitis (MEcfs) to depression, anxiety, OCD and neurodegenerative disorders. In their book Chronic: The Hidden Cause of the Autoimmune Pandemic, Dana and Dr Phillips explore the science behind common infections that are difficult to diagnose and treat and debunk widely held false beliefs by doctors that keep patients chronically sick. With the Covid pandemic still going parabolic, and the number of Long Covid patients with chronic autoimmune symptoms also skyrocketing, their book could not be more timely. Connect with Dana Parish: Thechronicbook.com Facebook.com/thechronicbook Twitter @Lymebook IG: Instagram.com/thechronicbook Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com   Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When nurse Denise Crawley connected with me about sharing her experiences with her own medical errors in the workplace, I thought it was a great opportunity to hear from a health care worker from their side and perspective of medical errors. As Denise states, there is a big problem with how the health care system responds to medical error, especially how systemic contributors to medical error are rarely addressed, and how the response tends to focus on individual blame. This in turn fosters a medical culture of cover up, denial and fear.  With medical error being the 3rd leading cause of death for many decades, it is self evident that the current process of dealing with medical mistakes is fatally flawed.  Denise refers to it as the Swiss Cheese model of how medical errors manifest in that within the various layers of healthcare, there are holes in each layer, and when these holes line up, medical harm and death can happen. While we often think of medical trauma exclusive to the patient, as Denise shares, health care workers can be traumatized by participating or witnessing or covering up medical errors. Denise has had to deal with the trauma, and as you’ll hear, is experiencing post traumatic growth. Connect with Denise Crawley Facebook: https://www.facebook.com/denise.elaine0218 Twitter: https://twitter.com/denisecrawley Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When author Maya Dusenbery started to experience pain after a viral infection, she was introduced to a medical system that mostly marginalizes women and dismisses diseases that predominantly affect women.  This of course will come as no surprise to any female that has a disease the medical system does not readily recognize. If that disease doesn’t have a biomarker yet, doctors will often attribute women’s physical symptoms as psychological in origin. This is known as medical gaslighting and its origins can be traced back to the cocaine fueled thinking of Sigmund Freud and beyond. In spite of medicine and research claiming to be self correcting institutions, Maya lays out the problems embedded in research, diagnosis and treatment and identifies 2 cracks - or what Maya calls ‘gaps’ - in the health care system: A knowledge gap and a trust gap, and the feedback loop that sustains them. In this interview, we unpack Maya’s experience with the health care system and why it prompted her to take a deep dive into exposing the systemic gaps in women’s access to appropriate research data and treatment protocols. Connect with Maya Dusenbery https://www.mayadusenbery.com/ https://twitter.com/mayadusenbery Buy Maya’s book on Amazon Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

“We’re living in a horror movie” says Anton, speaking for his brother Holger who is so severely sick that he cannot eat or drink and has to be tube fed. Yet the Swedish medical system thinks Holger has a psychiatric disorder and has threatened to have him forcibly committed to an institution against his wishes.  If the medical system succeeds, it will probably kill Holger.  Anton, and the rest of Holger’s family, are fighting a medical system that does not recognize or understand the disease myalgic encephalomyelitis, or ME. Holger’s family have started a public campaign including social media to #HelpHolgerNow to save him from a torturous death at the hands of the medical system. I interviewed Anton about Holger on December 21st --- subsequently Anton emailed me this message about their medical system:  “the police report was regarding them tricking Holger to the psychiatric ward in the beginning of December. IVO is the healthcare inspektion authority. We are working on a new report to them covering a bigger picture with all the things that happened this fall, the psychiatric ward in the beginning of December...and also their threat of forced institutionalization. Holger has been denied to seek a doctor of his own choice because he lives in the care home. But our lawyer says that that is not legal. So we are now trying to find a doctor we can trust and do not deny ME. We know who we want and hope she says yes. We have not accepted the healthcare director's reply and asked him to invite us to a meeting and also give us an informed answer because he obviously isn't aware of the details. He is now questioned already by IVO because of the region's handling of Covid-19 patients. They have failed.” To follow and support Holger and see if the Swedish medical system tortures and kills him, go to Help Holger Now on Facebook: #HelpHolgerNow Facebook: https://www.facebook.com/helpholgernow (MEpedia entry about Sophia Mirza who had ME and died after being forcibly moved to a psychiatric institution: https://me-pedia.org/wiki/Sophia_Mirza ) Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Medical knowledge is embryonic. They are still discovering new body parts. Sometimes medicine doesn’t break new ground, but has to be dragged into the light.  A case in point is cannabis. The therapeutic value of cannabis has been known for millennia, yet modern medicine vilified the medication, pathologized cannabis users, while the legal system criminalized cannabis patients. Now we see the global movement making great headway toward decriminalizing and medicalizing cannabis. And as it is with most changes to the medical system, it did not come from within, but from pressure from outsiders, namely patients. In this episode of Medical Error Interviews, I chat with Sarah Colero who’s debilitating migraines were made worse by opioids, but better by cannabis.  We unpack Sarah’s experience with multiple brain surgeries and a medical system often intentionally ignorant about the medicinal benefits of cannabis, and her advocacy efforts to bring equity in access for patients that need medicinal cannabis to treat disease and symptoms. Connect with Sarah Colero: Twitter:  @Sarah_Colero Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

Author and writer Maija Haavisto caught my attention with her article titled ‘Medical Trauma: Gaslighting and Continuous Stress Eating Away at Your Self Worth’. In her writing, Maija accurately captures the consequences of harmful medical experiences I witness in my counseling clients.  As I’ve said elsewhere, medical error and trauma are the unacknowledged pandemics within our health care systems. Maija grew up in Finland, a healthy child until she got the flu as a teenager and never recovered.  Kicked out of an abusive home at 16 as she struggled with sickness, Maija relied on her writing prowess and carved out a successful career as a journalist and medical writer who has authored 17 books in Finnish. Along the way, Maija’s health has fluctuated, she eventually got a diagnosis of MEcfs, moved to the Netherlands partly for healthcare reasons in 2010, but she has never been totally healthy again. Of course, having undiagnosed and unrecognized symptoms, and then getting a diagnosis of a medically marginalized disease, means Maija had to have numerous encounters with the health care system. Encounters that more often than not, would be stressful and trauma inducing.  But Maija has taken her lived experience with the chronic disease MEcfs, and her more recent experience with Long Covid (aka post Covid syndrome), and her encounters with the health care system, and uses those elements to inform her writing. Maija makes the point that medical trauma is different from post traumatic stress. As Maija writes in her article,  “Another aspect that makes medical trauma particularly pernicious is the way we may be forced to face our abuser and pretend nothing has happened. Even if we manage to cut them off, their pointed comments may stick in our medical files.” And that’s exactly what distinguishes PTSD from continuous medical trauma.  If you have a complex chronic illness, especially one that is medically marginalized, you probably cannot divorce yourself completely from the health care system to try to protect yourself from further abuse and trauma. You are forced to continue to engage with your traumatizer, both the physician and the health care system -- and that makes medical trauma continuous, and some would say, chronic trauma. Connect with Maija Haavisto Twitter: @DiamonDie Maija’s Medium article: https://maija-haavisto.medium.com/medical-trauma-6fa90c6ecab0 Website http://www.fiikus.net  Maya’s CFS/ME book http://www.brokenmarionettebook.com  YouTube - hypnosis and meditation audios  https://www.youtube.com/user/diamondie Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

One of the good things about interviewing people about their medical error experiences is the feel good stories about making the health system safer, and making meaning out of trauma, a phenomenon known as post traumatic growth. In this interview with Jessica Pin, she shares the insights she’s learned about the gross deficiencies in the medical system where it intentionally maintains blind spots about female anatomy and female sexuality.  A medical system where surgeons are performing procedures on female genitalia with shocking little understanding of the female body. Jessica, the daughter of a surgeon, recounts her own experience receiving a surgical procedure that she did not consent, and to which the doctor had no understanding or training. This unwarranted surgery would impact Jessica’s intimate relationships, her relationship with her parents, and her relationship with herself. In her efforts to make meaning out of her medical injury, Jessica sought the support of psychiatrists and therapists -- but she again experienced dismissal, minimization and invalidation. Essentially further harming Jessica as invalidated trauma deepens trauma. Eventually, through her own efforts and self education about recovering from trauma, Jessica focused her efforts on changing the system to prevent more women from being physically harmed, sexually diminished, and psychologically traumatized. Connect with Jessica Pin Twitter @MediClit https://www.instagram.com/p/CD7VMj2pZ_q/?igshid=163uygx8r1ibq Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When you’ve been sick since a child - as Jeanne McArdle has been - you gain a preternatural insight into the world of medicine and medical care. And if you have a disease unknown or misunderstood by medicine, you get the advantage of being an ‘outsider’ while inside the system.  Of course, this cuts both ways: having a medically marginalized disease essentially guarantees medical harm, neglect, gaslighting and distrust of doctors. In this interview with Jeanne McArdle, she recounts the myriad ways physicians have gaslighted her over the years -- at times, this ubiquitous gaslighting from authority figures undermined Jeanne’s own sense of her body and reality. Even when Jeanne used her Master’s research skills to track and plot the objective biological changes in her body, the evidence was dismissed by doctors.  When Jeanne reported bodily pain, doctors would ignore or minimize it.  It was not until Jeanne got in front of a doctor that specialized in her symptoms that the gaslighting stopped and the appropriate testing and treatment began. But as Jeanne points out, if the doctor can’t figure out the problem, the patient becomes the problem. Connect with Jeanne McArdle Twitter: @JeanneMcArdle Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When yoga teacher Liz fell down a flight of stairs while moving a mattress and injured her foot, she had no idea that multiple misdiagnosis and missed diagnosis would cause her years of medical gaslighting and chronic pain.  Liz’s health care experience is littered with story after story of incredible incompetence, false accusations and patient blaming.  With a few exceptions, most of us are raised to believe that our health care systems are looking out for our best interests, that they are self correcting institutions that prioritize patient safety. In reality, the health care system has morphed into a system that prioritizes and protects the status quo of physicians as god-like entities that can do no wrong. And unless you’ve experienced medical harm, neglect or gaslighting from the health care system it is hard to fathom that a strong element of the ‘helping’ profession is really about helping themselves. This is evidenced by the alliance of physicians with lawyers to protect doctors when they harm or kill patients. Those high priced lawyers will try to delay court cases to run up the lawyer fees, essentially bankrupting the injured patient. Or the lawyers use stall and delay tactics in hopes the patient dies before the case goes to trial. To complete the moat around their elite status, physicians worked the political system to have laws and policies implemented that further protect doctors from accountability. This further entrenches the medical system as unaccountable for their actions. Yet we only have to consider that medical error is the 3rd leading cause of death to recognize that the doctor / lawyer / politician triumvirate is effectively working to protect a high harm and death rate. Liz shares the failures of the medical system, and the gem of a physician she found that  has helped improve her quality of life --- a quality needlessly diminished by repeated medical errors. Connect with Liz Perloff: Twitter @thepenof  Website: FromThePenOf.com  Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com   Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When Daria Oller got sick with mild Covid symptoms in mid March, she assumed she’d be back to full health in a week or two. Now over 7 months later, Daria -- a physical therapist, athletic trainer, runner and dancer -- is still beset with physical symptoms, especially a delayed and dysfunctional response to exercise, known as post exertional malaise - the hallmark symptom of another post viral disease called myalgic encephalomyelitis, or MEcfs.  Daria is also dealing with cognitive symptoms that makes reading and retaining material a challenge -- this is known as brain fog and also common in MEcfs patients,  As you’ll hear Daria explain, the physical therapist professionals are mostly uninformed about post exertional malaise -- in reality, exercise is contraindicated for post exertional malaise and people living with MEcfs -- and now this seems to extend to at least some of the Long Covid patients emerging from this pandemic.  This was not surprising - in fact it was predictable - as it is well known in the viral research community that a significant proportion of people just never recover from viral infections and they develop MEcfs. But the medical community, including other health providers like physical therapists, has been mostly ignorant about MEcfs and this has caused a lot of harm to patients on a global scale. If there is a silver lining in this pandemic, it is that people like Daria in the health professions who - unfortunately - develop Long Covid cum MEcfs will now have the lived experience of MEcfs symptoms and will be able to provide empathic and appropriate care. Not the gaslighting and harm MEcfs patients have endured for decades -- and many Long Covid patients are also experiencing. Connect with Daria Oller: Twitter  @OnTapPhysio Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com   Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

Unless you’ve experienced it yourself, it is hard to fathom the cruelty and abuse by some doctors and nurses on sick, vulnerable and dying people. It is hard to reconcile that the ultimate helping professions can have so many people who exhibit truly sadistic and sociopathic behaviour. To understand how ubiquitous medical abuse and neglect is in our health care systems we only have to look at the recent example in the news of the death of Joyce Echaquan who livestreamed abuse by nurses in the days before she died. Unfortunately MaryAnne Martin-Smith knows what it feels like to be dying while being medically abused -- perhaps ‘tortured’ is a more accurate description. MaryAnne went to the hospital for simple back surgery and expected to be out the same day, but without back pain. But what happened to MaryAnne is like something out of a Stephen King novel: a surgeon unwittingly slices open MaryAnne’s arteries causing blood to pour into her abdomen, squishing her organs and causing immense pain -- which nurses and doctors ignore in spite of MaryAnne’s pleading for help. When the medical staff finally acknowledge MaryAnne is dying, it is one shocking error after another -- the medical staff have to bring MaryAnne back to life 3 times -- not wanting to die alone, MaryAnne begs for the nurse to call her husband -- and the nurse tells MaryAnne to stop being so selfish. Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

What is the connection between a ‘weak bladder’ in childhood and spine surgery in adulthood? For Melinda Maxwell, a diagnosis of craniocervical instability (or CCI) provided clarity of that connection after decades of doctors dismissing her symptoms or giving a misdiagnosis. Craniocervical instability, as its name implies, is essentially a mechanical failure where the head joins the spine causing it to be unstable -- and it can cause a wide range of mysterious and disabling symptoms that are hard for doctors - who mostly work in silos - to connect. For Melinda, the CCI diagnosis and subsequent surgery has given her a second chance at life. As a licensed Physical Therapist, Melinda has had to question everything she was taught in PT school as those practices can cause more harm than good in people with diseases that are medically marginalized and clinically misunderstood.  Melinda shares her health care journey to finally getting a diagnosis and proper treatment, and what she’s doing now to prevent more harm to CCI and ME patients from her Physical Therapist colleagues in the future. Connect with Melinda Maxwell: https://www.facebook.com/groups/3049027761780369/?ref=share Post interview note from Melinda: “One thing I didn’t mention is that I haven’t had to have a tethered cord release yet. Dr. Patel is watching it. Some CCI patients have to have it released after fusion but so far my symptoms aren’t bad enough.” Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

Jonah McGarva is one of what will be millions of people around the globe with Long Covid. And many pandemic survivors that develop Long Covid are frustrated by their government’s lack of appropriate response. Most government health leaders barely mention - or even warn the public - about Long Covid. This is known as political invisibilization. And it works by refusing to acknowledge an issue, or in this instance, a disease. It is reminiscent of the early years of the AIDS pandemic when politicians were silent about death by AIDS. This gave rise to the advocacy chant of “Silence = Death”.   The government’s motivation to invisibilize a disease may be based on ignorance or prejudice or to protect and hide their own errors and failings from the public.    Government’s may also be motivated to invisibilize Long Covid to deny disability payments, or to protect corporate insurers from Long Covid claims. Government’s are also notoriously burdened by entrenched bureaucrats with allegiance to their careers and the status quo, not public health.    Compounding the political invisibilization of Long Covid patients are physicians who dismiss physical symptoms as psychological or the catch all diagnosis of anxiety. This is known as medical gaslighting. It is the unacknowledged pandemic within our health care systems.    Mix those systemic factors with some narcissistic and sociopathic personalities in both the political and medical systems and the result is a group of very sick and disabled people being medically and economically marginalized.   The good thing is that lots of physicians are experiencing Long Covid and that means they are also experiencing being gaslighted by their colleagues. This is known as ‘getting a taste of your own medicine’ and is the most valuable medical education any of these doctors will ever experience.   And as Long Covid patient Jonah McGarva recounts, many doctors need to learn this lesson.   Connect with Jonah McGarva Twitter: @jonah_mcgarva   Jonah interviews:CITY TV NEWS - Oct. 17th VANCOUVER IS AWESOME - Web Article - Oct. 15thGOFUNDME - Set up on Oct. 12thUNIVERSITY OF CALGARY - Covid Corner - Oct. 7thW5 - Season Premiere - Sep. 26thCBC Web Article - Sep. 20thCTV National News - Aug. 12th Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When Tracy Fossum had all the symptoms of a heart attack, the emergency room doctors thought Tracy was drug seeking and sent her away. Then her pain specialist physician implored her to go to a different hospital’s emergency room because they were heart attack specialists and would have to run appropriate tests.  But they thought Tracy was drug seeking too and made her wait 6 hours before being seen by a doctor --- and even then and in spite of being in immense pain for hours, the doctors and nurses were shaming and denigrating Tracy -- that is, until her heart stopped beating. At that point, the doctors and nurses suddenly became empathetic and supportive of Tracy -- not because they cared about her, but because they realized she was having a heart attack and her husband had witnessed the abuse and neglect and was about to witness her death by medical bias. This is just one of many harmful medical experiences Tracy has endured while being sick since childhood -- and they have formed her advocacy work around chronic pain -- and as more Long Covid patients report chronic pain, the number of patients needing Tracy and her team’s support is about to explode.   Connect with Tracy Fossum: Email: Helpalbertaspain@gmail.com  Website: Www.helpalbertaspain.com  Facebook: Www.facebook.com/groups/helpab  Twitter: @HELP_AB  

When Melissa Shiff had surgery on a cyst in her back, the surgeon nicked her spinal fluid canal causing it to leak spinal fluid. This medical error would lead to more errors and medical harm for Melissa.  As Melissa wrote to me after the interview: “I get internal tremors, non epileptic seizures, slurred speech, sometimes I lose the ability to move my limbs and need to be carried and of course can barely stand or walk.” The health system proved useless and essentially abandoned Melissa to suffer without medical care. As a result of her own research and determination, Melissa eventually got a correct diagnosis, one that could be treated with surgery -- but then she was faced with a health care system ignorant about the disease and the only qualified surgeon in prison for murdering his wife. But Melissa is not one to give up easily -- listen to find out how Melissa is working hard - and horizontally from her bed - to get the surgery she needs to have any hope of leading a normal vertical life.   Swedish Study: https://www.frontiersin.org/articles/10.3389/fneur.2020.00828/full   Connect with Melissa Shiff:   Twitter: @MelissaShiff   Facebook: https://www.facebook.com/melissa.shiff.5 Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com   Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

Dr Terri Lewis is a clinical educator with more than 30 years of experience in the development and administration of community rehabilitation and counseling programs. Terri’s insights into the machinations of the medical system come from both her professional career and her role as a mother. When Terri’s child experienced pain, it was by and large dismissed by doctors as if children were from a different planet where the species didn’t experience pain.  By ignoring what Terri’s son was reporting, doctors contributed to a worse and more painful - and needless - outcome for him. In our interview, Terri shares both the formal and personal aspects of her experiences with the health care system --- a medical system that is not focused on the patient as they purport, but focused on cutting patient-doctor appointment time and decreasing other costs while maximizing profits. A system Terri aptly describes as ‘drive-by medicine’. Connect with Dr Terri Lewis: Tennessee Pain Care for All https://www.facebook.com/groups/219464761765372 Fungal Meningitis Survivors https://www.facebook.com/groups/meningitisoutbreaksurvivors Twitter https://twitter.com/tal7291 Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

When journalist Miranda Levy couldn’t sleep due to a relationship upheaval, she sought support from her doctor and fell down a multi year rabbit hole into the wacky world of psychiatric medicine. Miranda lost herself in a health care system that has little understanding of the powerful psychiatric drugs they dispense like candy. The health care system also has little motivation to acknowledge the torturous effects that can come from withdrawal from these drugs. Miranda doesn’t mince her words about her experiences with the medical system and the physical addiction it created - where it failed and where it helped - and where it abandoned her when she was at her most sick and desperate and in need of help. Miranda tells how a treatment centre publicly humiliated her as part of their therapy. And how she felt compelled to lie at the treatment centre’s 12 step program and say “My name is Miranda, and I’m an alcoholic” - even though alcohol was not the issue, it was prescription medications that she was addicted to. Fortunately, Miranda took control of her health and destiny and started to slowly wean herself off the medications - an ongoing process that is taking years - but she’s got her sharp mind back, she’s back to work as a journalist, and she’s writing a book about her safari into insomnia, mental illness, and the psychiatric world’s version of ‘big game hunters’: Big Profit Pharma   Connect with Miranda Levy Blog - Tales of an Insomniac.com  https://t.co/wxRppQWFHJ?amp=1   MirandaLevy.co.uk Twitter @MirandaLevyCopy   Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.   Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.   Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.   My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

If you had any doubt the medical system, in collusion with the legal, political and insurance systems, were corrupt, those doubts will be waylaid when you hear Beau Tiffany’s experiences with medical error. Beau has had to endure and battle biased systems since he slipped and fell hard down wet stair steps, causing him multiple injuries. But it was a wrong diagnosis that somehow got into Beau’s electronic health records that led to 2 surgeries for illnesses he did not have. These needless surgeries have permanently injured Beau’s body and greatly impacted his quality of life -- physically, emotionally and socially. But as you’ll hear, Beau is also making meaning out of his traumatic experiences with medical, political and legal systems that at times collude to deny appropriate health care and deny even a semblance of  justice to medically harmed patients. Part of Beau’s meaning making is being the creator and host of the Digital Voices podcast, a space for people to share their experiences of - and responses to - medical error. In my interview with Beau, he shares how his experiences with our societal systems began when he was put into the foster child system as a toddler, a system that would abruptly abandon him and leave him homeless as a teenager.  But Beau was a voracious reader and had goals of seeing the places and things he had read about, and that motivation took him from living under a bridge to college and world travel and entrepreneurship.    Connect with Beau Tiffany:  Digital Voices podcast on Facebook: https://www.facebook.com/Digital-Voices-with-Beau-Tiffany-101452114876004  

Pretty much everyone who’s had a chronic or complex illness will have a story to tell about some of the most ignorant and arrogant - and dangerous - utterations made by physicians. I’ve spoken with a lot of health care workers and patients from a wide variety of health care systems, and regardless of their geographic location, the god complex physician culture is rampant in their institutions and is a significant cause of medical error, harm and death. When Jenna Payne’s health took a nose dive, she encountered countless doctors that dismissed or denigrated or shamed her physical symptoms. Turns out Jenna wasn’t faking her symptoms, and she didn’t need a husband and baby. What Jenna needed was a competent physician. In our interview, Jenna takes us on a journey from the United States to Russia, and from health care to health harm. Connect with Jenna Payne: www.jennapayne.com https://twitter.com/jenna_payne https://kypsel.com/comics/zompire-vixens-from-pluto-episode-one https://www.youtube.com/user/dirjennapayne www.disastercapitalproductions.com  

Have you had an MRI? Was it an MRI ‘with contrast’? That’s when the MRI technician injects you with a chemical called gadolinium so they can read the MRI easier. They probably told you to drink a lot of water to flush it out of your system, and that it would be gone from your body in 24 hours. What they probably didn’t tell you is that some people’s bodies don’t flush out the gadolinium and it makes them chronically sick and disabled.  And they probably didn’t tell you that the Food and Drug Administration requires that an MRI with gadolinium comes with a black box warning. Or that Europe and Japan have banned the use of gadolinium. And they probably didn’t tell you that even if you do report side effects, you’ll be gaslighted by doctors who will tell you it’s impossible to have gadolinium toxicity and that you’re imagining your symptoms.  In this episode of Medical Error Interviews, I chat with Casey Steidle, a creative and athletic woman living in California. Casey tells us about her body’s immediate reaction to the gadolinium injection, the response of the health care workers and her doctor, and then the tragedy of her doctor sending Casey for another MRI with contrast and how that severely damaged her body. Casey also shares how she had to take control of her own health destiny when the medical system turned its back on her, and about the treatments she pursued that have helped her regain a lot, but not all, of her health and quality of life.   Mri toxicity illnesses - FB -- https://www.facebook.com/groups/Gadolinium The Lighthouse Project:  https://gadoliniumtoxicity.com/ Casey’s website www.caseysteidle.com  Instagram @caseysteidle Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.   My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

When Donald’s pregnant wife was diagnosed with a serious heart condition, and then a few months later their newborn son was also diagnosed with a similar, but different, life threatening heart condition, the Lepp family started 2 similar, but different, simultaneous journey’s in the health care system: one designed for children and the other for adults --- and along the way they encountered many forms of medical error. Ih his book ‘Heart Broken’, Donald recounts the emotional rollercoaster his family endured as their life and death care intersected with a bureaucratic medical system stuck in status quo. Too often we hear of families doubly devastated when the hospital denies and or delays a resolution and reconciliation. For the Lepp family, developing clear communication - and trust - with the health care team was crucial for positive outcomes. In our interview Donald shares his insight about their experiences afforded through hindsight. As Donald notes, medical errors are common place, a reality that cannot be denied --- and what is most salient is how the health care system responds to those errors. Depending on that response, a bad situation may become tragic -- or may become an opportunity of learning and meaning.  We all know what injured patients prefer.   Connect with Donald Lepp: Buy Heart Broken online Facebook: https://www.facebook.com/donald.lepp Linkedin: https://www.linkedin.com/in/donald-lepp-cphr-shrm-scp-0717589a/ Twitter: @DonaldLepp Personal blog:  https://t.co/8j7uX0Dh8x?amp=1 Book blog: https://t.co/PjJFPpwvJD?amp=1  

In spite of our great science and medical advances in the last 100 years, what we know about how the body works is still embryonic. Especially when it comes to our body’s most complex organ - the brain - as Dr Susan Cunliffe can attest.  Dr Cunliffe received numerous rounds of ECT - aka shock therapy -  each more powerful than the last, each designed to ensure Susan’s brain was assaulted so hard it had a seizure.  The brain tries to protect itself from the convulsions and seizures caused by electricity - so it takes higher doses of electricity to induce the brain seizures. When Susan’s cognitive ability decreased after ECT, her symptoms were interpreted as worsening depression - not ECT induced brain damage - and she was given more ECT, causing more brain damage.   Psychiatry calls this a treatment. Others call it barbaric.    But these are the facts: Doctors don’t understand very much about the brain - for example, pharmaceutical manufacturers market antidepressant drugs on the idea that depression is a ‘chemical imbalance in your brain’ -- turns out, that’s not true, there is no evidence for a chemical imbalance as a cause of depression -- but that doesn’t stop 1,000s of unwitting doctors from prescribing them. Doctors definitely don’t understand how electricity impacts the brain. Physicians don’t know how to treat the brain on any level beyond throwing powerful psych meds at it --  and they haven’t studied traumatic brain injury so they don’t know what symptoms to look for or how to recognize signs of injury -- yet they are allowed to put electricity through people’s brains.   Psychiatry, that embarrassing discipline of medicine that operates outside the usual rules of evidence based science or prioritizing patient safety, religiously defend their practice of jolting the brain with electricity so hard that it causes the brain to have a seizure. Like religion, it is based on faith, not facts.   In this episode, physician Susan Cunliffe gives an insider’s view of the UK medical system where their own data shows 1 in 5 ECT patients experiences severe and permanent brain damage. But that doesn’t stop powerful psychiatrists from continuing to electrocute people’s brains and call it ‘medical care’.   Listen to find out who Susan found to help her brain to heal, and what she’s doing to heal a broken medical system.   Connect with Dr Susan Cunliffe: Twitter: @CunliffeSue Resources: Headway (UK) https://www.headway.org.uk/about-brain-injury/ Head Injury - book - Trevor Powell https://www.amazon.co.uk/Head-Injury-Practical-Speechmark-Editions/dp/0863884512 Facebook:  Drop the Disorder: https://www.facebook.com/groups/1182483948461309 International support group ECT survivors: https://m.facebook.com/groups/414257808688052?view=info&refid=18   Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com   Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

Mack Doyle has been sickly since birth -- and along the way medicine gave her numerous diagnoses to explain her symptoms, none of which turned out to be correct. When Mack’s allergy skin tests showed her positive to over 140 foods, grasses, and pollen, the doctor didn’t believe it. “Impossible” he said.  He told Mack she wasn’t allergic to anything, she just had irritable bowel syndrome. But Mack had ‘been there, done’ that with an IBS misdiagnosis before and was adamant she had allergies. Turns out the patient was right -- she just needed a doctor who could connect the dots of Mack’s various symptoms that pointed to mast cell activation syndrome (MCAS), essentially an overactive immune response by our mast cells. Part of the problem of getting a diagnosis was that MCAS was not officially recognized until 2007, so even today very few physicians are aware of the disease. That means patients spend many years and a lot of money trying to get a diagnosis and treatment.  It also means a lot of undiagnosed MCAS patients face repeated gaslighting by physicians in a health care system that quickly defaults to the harmful trope ‘in your head’ for illnesses they can’t immediately diagnose. Mack not only shares her health care journey experiences in finally getting a correct diagnosis, but also what she’s learned about the myriad ways MCAS can manifest.  If -- like me -- you have weird symptoms that doctors couldn’t explain or dismissed as ‘in your head’ -- then you’ll want to hear what Mack has learned about our mast cells and how you can manage them better. Connect with Mack: Twitter: https://twitter.com/MackWithMast GoFundMe:  https://gofundme.com/f/help-mackenzie-fight-mast-cell-disease… Facebook Group: https://facebook.com/groups/MastCell Personal Facebook: https://facebook.com/mackenzie.doyle.12 Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

If you’re living with a complex chronic illness, you’ve probably had many medical appointments -- and probably experienced many medical errors, from the benign errors that did not impact your life, to potentially serious errors that will forever lower your quality of life. When Charis Hill’s pain skyrocketed and health tanked and no doctor’s were providing a correct diagnosis, Charis reached out to their estranged father, expecting to get advice on living with a disability. What Charis didn’t expect was for their father to diagnose Charis with ankylosing spondylitis, or AS, an inflammatory disease that causes bones in the spine to fuse. This fusing makes the spine less flexible, can cause a lot of pain and greatly impact mobility. As Charis’s body failed, Charis’s identity as an athlete slipped away -- and so began a journey into the external financial world of health care and health insurance systems -- and a journey into the internal emotional world of trauma and meaning and growth. A journey that is taking - and making - Charis into an unintended chronic illness advocate, giving voice and political clout to the medically marginalized. In our interview - where we faced some minor periodic technical challenges, so please roll with the intermittent audio glitches - Charis tells how they reinvented themselves and learned to love the mobility devices like wheelchairs -- symbols that represent disability to the able in society. Charis shares how these ‘disability symbols’ are actually tools to participate in society, tools of freedom.   Connect with Charis Hill:   BeingCharis.com https://beingcharis.com   Facebook: Charis Hill - Writer, Speaker, Advocate - Being Charis https://www.facebook.com/BeingCharis   Global Healthy Living Campaign:  https://www.ghlf.org/coronavirus-patient-support/   Spondylitis.org: https://spondylitis.org/resources-support/support-resources/   Becoming Incurable documentary: https://www.becomingincurable.com   Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.   My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

When Candia McCullough went in for routine hysterectomy surgery for her heavy periods, she was expecting the surgery to give her a better quality of life. What she was not expecting - and did not consent - was to have a medical device implanted into her abdomen and have it attached to her spine, bladder and colon.  When Candia awoke from the surgery, the surgeon proudly told her he had implanted a plastic mesh in her abdomen to support her internal organs.  While the surgeon boasted about his surgical expertise, Candia was emotionally shocked he had done a medical device implant surgery without her consent, and physically immersed in pain as the plastic mesh dug into and perforated her internal organs.  As the plastic mesh gets warmed by the body, it degrades and releases toxic chemicals into Candia’s system. The plastic mesh also twists and pokes holes in Candia’s internal organs causing incredible constant pain - like 9 out of 10 on the pain scale - and often made worse by movement. But instead of getting medical care and support for the damage done by the illegal mesh implanted without her consent, Candia was gaslighted by the medical system as they denied the plastic mesh could be causing her myriad symptoms and told Candia her physical pain and symptoms were psychosomatic. In doing this, the health ‘care’ system essentially deepened Candia’s trauma. In this interview with Candia and her husband Ian, they recount the far reaching impact the plastic mesh implant has had on their lives, their marriage and their mental health. Connect with Candia:   Website: www.meshuk.org E-mail: info@meshuk.org Twitter: @MeshUKCT @CandiaMcCullou2 Instagram: mesh_ukcharitabletrust Youtube:  www.youtube.com/c/meshukcharitabletrust Facebook: https://www.facebook.com/MeshUKCT/   Link to our evidence we gave to our Government in respects to surgical mesh: https://www.youtube.com/watch?v=wC2dGNt_5dY  

As we learned in part 1 of Rachel’s interview, she comes from a family of physicians, and when she was seriously injured by Accutane, a medication many teens and young adults take for acne, Rachel found herself at odds with her family’s complete buy-in to the corporate pharmaceutical narrative and their wholesale acceptance of Big Pharma’s so-called research.   All the doctors denied Accutane injured Rachel and diagnosed her as psychosomatic. Rachel’s family also didn’t believe her, calling into question her mental stability.   Not surprisingly Rachel felt doubly deceived by medicine and her family, and as pretty much any one who’s experienced a medical error can attest, when doctors and hospitals deny the error or the harm it caused, that invalidated trauma gets deepened.   In part 2, Rachel tells about the pressure from her family to abandon natural approaches to health and embrace ‘better living through chemistry’, including taking Accutane for moderate acne.    We then hear the hellish side effects Rachel has and continues to endure, what she learned when she took a deep dive into Accutane side effects and the pharmaceutical industry, and how she’s coping with through advocacy and education.   Connect with Rachel and community: Accutane Long-Term Side Effects 3.3k members https://www.facebook.com/groups/214733665588935/   Accutane Survivors, Roaccutane, Isotretinoin Injuries & Side Effects 10.7k members https://www.facebook.com/groups/AccutaneSurvivors/   Life After Accutane - A Group For People Damaged By Isotretinoin  - 300 members (for accutane survivors only) https://www.facebook.com/photo.php?https://www.facebook.com/groups/lifeafteraccutane/   RxPilld (our awareness platform for pharmaceutical injuries): https://www.youtube.com/channel/UC2FCCzGU8gWCFrzS5CbjCoQ  Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com     Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.   Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.   Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.   My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Growing up in an affluent community, but as the only non-white kid in her school, Rachel Winters learned early how our social narratives, be they ethnic or medical, can have profound impacts on our life trajectory. Coming from a family of physicians with a ‘better living through chemistry’ approach to medicine and pharmaceuticals, Rachel’s trust in the medical system was deeply ingrained from an early age.  Her father assured her that medications were safe, and encouraged Rachel to not feel ashamed about taking pharmaceuticals. When Rachel had trouble sleeping, her mother shared her own sleeping medications. When Rachel had a foot issue and wanted a simple out patient treatment, her father insisted on ‘proven’ invasive and disabling surgery. So when Rachel’s body became dependent on medication given for an erroneous diagnosis, and her foot surgery induced blood curdling screaming pain, Rachel began to see the cavernous cracks in the health care system. She realized she had been repeatedly betrayed by so-called evidence based medicine. In fact, health care is often decision based evidence making. When Rache’s family dismissed the medication side effects and her physical symptoms as psychological, the sense of medical and familial betrayal deepened. In part 1 of this interview Rachel shares how her family of physicians shaped her trust in the scientific process and medical establishment, but it was her real world experience of multiple medical errors that opened her eyes to the reality of health care, big pharma, and the role of physicians in perpetuating profits over people.   Connect with Rachel and community: Accutane Long-Term Side Effects 3.3k members https://www.facebook.com/groups/214733665588935/   Accutane Survivors, Roaccutane, Isotretinoin Injuries & Side Effects 10.7k members https://www.facebook.com/groups/AccutaneSurvivors/   Life After Accutane - A Group For People Damaged By Isotretinoin  - 300 members (for accutane survivors only) https://www.facebook.com/photo.php?https://www.facebook.com/groups/lifeafteraccutane/   RxPilld (our awareness platform for pharmaceutical injuries): https://www.youtube.com/channel/UC2FCCzGU8gWCFrzS5CbjCoQ    Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When I saw that Chandra Pasma was interviewed by media outlets, and that she lead the push for health officials to acknowledge and act upon patients still sick with COVID, I knew I needed to reach out to her and find out her experience with COVID and the health care system. While the medical system has long known, but rarely acknowledged, that some people don’t recover from viral infections, and instead continue to experience a wide range of neurological symptoms, the COVID pandemic - and patient advocates like Chandra - are forcing health care systems to address the research, treatment and care of long haul COVID patients, and by extension, the millions of others who previously got sick with ‘the flu’, but remained sick -- sometimes so ill, they are house and bed bound, requiring total personal support. You may be asking yourself: if medicine has known for a long time some people don’t recover from viral infections, why haven’t they been researching it? Mostly it is because there is a wide spread and embedded medical error in the medical system -- it is so embedded, most physicians are blind to it. Just like fish don’t see water.  This institutional error is the physician’s ingrained habit of telling patients with physical symptoms with no obvious cause, that they are ‘all in your head’.  This is known informally in patient circles as gaslighting. It is more formally called medical harm. And it is a pandemic unto itself. But with millions of people infected with COVID, and early reports that at least 1 in 10 are not recovering, it will be near impossible for physicians to dismiss long haul COVID patients’ symptoms as ‘all in your head’. The cruel irony is that for at least 3 decades, biological research on people with post viral illnesses, like MEcfs and SARS, had been mostly non-existent. And we can thank psychiatry, the least reputable division of medicine, for impeding biological research funding, and instead, embedding medical error in the form of gaslighting, in health care systems around the world. So this may be one of the ‘good’ things that come out of the COVID pandemic: stopping the medical harm from physicians and psychiatrists of patients who don’t recover from viral infections.    Connect with Chandra Pasma on twitter: @ChandraPasma Long Covid Facebook:  COVID Long Haulers Support Group Canada https://www.facebook.com/groups/920314451799658 COVID Long Haulers Canada: https://www.facebook.com/groups/950023472135178 Body Politic - COVID support group: https://www.wearebodypolitic.com/covid19   Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When I first connected with Debbie Lambert about her experience with gadolinium toxicity, I had to google ‘gadolinium’. When I read that gadolinium is the substance they inject you when you get an ‘MRI with contrast’ and that it can cause toxicity, I immediately started to search my memory.  I can recall at least one occasion of getting an MRI with contrast -- I remember the warm sensation it caused in my body, and the technicians telling me to drink lots of water to flush the chemical out of my body. After interviewing Debbie about her experiences living with the disabling chronic symptoms, and learning the facts about gadolinium toxicity, like the black box warning the FDA now requires, and the admission by the manufacturer that gadolinium accumulates in the body, I’m shocked that I’d never heard about this widespread problem.  I guess that’s a testament to the medical industries ability to hide, ignore and deny medical errors. As Debbie recounts, she was experiencing severe pain and it was determined it was emanating from her pancreas. Debbit was sent for a routine MRI with contrast to be able to get a better image of her troubled pancreas. The MRI technician did not ask for Debbie’s consent to be injected with gadolinium or inform Debbie about any potential harms from the invasive procedure. Debbie was hooked up to an IV and the gadolinium started to flow into her veins.  It was during Debbie’s 3rd MRI with contrast when things went horribly wrong and Debbie felt like she was being fried from the inside out. Debbie told the MRI technician immediately, but Debbie’s symptoms were dismissed and she was told to drink lots of water. But water wasn’t going to cure the damage done to Debbie’s organs. Water wasn’t going to stop the pain. Water wasn’t going to stop her from being disabled. Debbie does share what has helped - but not cured - her battle with gadolinium toxicity, and she shares about the community of survivors advocating and creating awareness about this problem so that others can make informed decisions about having the procedure. If you’ve had an MRI with contrast, or are concerned about the potential harm from gadolinium toxicity, you’ll want to hear what Debbie has learned about the medical system, the legal system, and your body’s systems when they are exposed to this rare earth metal. Connect with Debbie Lambert on twitter: @DebbieLambert On Facebook - Living With Gadolinium: https://m.facebook.com/livingwithgadadmin/… Info about MRIs and Gadolinium Toxicity: ttp://Mridye.com  Amazon e-book by Dr. Catriona Walsh: Contrasts: More Than Meets The MRI Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When you have a family member or loved one that needs medical care, and you do the research to find one the best doctors and one of the best hospitals to provide safe care, you expect that person will receive proper medical support.  What you don’t expect, is that they will kill your loved one. But that’s what happened when college student Alex Smick injured his back when he fell off his skateboard and then was prescribed a succession of opioid painkillers. As Alex’s mother, Tammy Smick shares, doctors were quick to hand out big pharma’s big profit opioid painkillers, causing Alex to have a dependence on them. As a grounded and responsible young man, Alex recognized what was happening and with his parent’s support, was proactive in seeking high quality, high priced, health care. But as Tammy recounts, within hours of checking into the hospital, Alex was killed by health care. The trauma from Alex’s unexpected death was deepened when Tammy found out the truth as to why her son died at the hands of doctors and nurses. The layers of trauma were further deepened when the doctor’s so-called punishment was secured through a closed door, backroom deal that left Alex’s family as powerless bystanders. Tammy tells us how she and her husband Tim have responded to the tragedy and injustice and are making meaning in Alex’s memory. Tammy shares about their relentless journey through the medico-political-legal system in their efforts for justice, for truth, and for systemic change so that other families don’t suffer the same needless institutional horrors. In the first part of the interview, you’ll hear Tammy’s neighbour in the background using a power tool to build an Ark or something, it’s kind of annoying, but it’s short lived, and fades away as Tammy recounts Alex’s last day. Connect with Tammy Smick on twitter: @TammySmick   Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

As a child, Amber had a very rare illness that made the small blood vessels in her skin, joints, intestines, and kidneys inflamed and bleed. Amber was so ill her mother thought Amber was dying. But Amber survived, got married and had children and thrived...until 3 days after having her gallbladder removed, when she experienced horrendous pain, far worse than the pain of childbirth. Painkillers did little to stop the upper abdominal pain Amber was experiencing, and when her blood tests came back normal, doctors suggested Amber was faking it to get pain medication.  But the doctors weren’t listening to Amber’s reports that pain medications didn’t help, and sometimes made the horrific pain even worse. In spite of writhing in pain on the emergency room floor, Amber’s pain was often minimized or outright dismissed and she was labeled a drug seeker. While Amber’s illness turned out to be a rare complication of gallbladder surgery, her experience of pain being dismissed, or being accused of lying, or of having psychological problems, is not rare.  In fact, it is hard to find any one with a complex or rare disease that has not experienced a doctor or nurse accuse them of faking pain or psychologically manifesting illness. It is so common, that it is a reflection of the culture of arrogance among health care workers, especially physicians. It also explains why so many people with complex or rare diseases have medical PTSD. Few things are more traumatic than being incredibly sick, and by extension extremely vulnerable, and being accused of lying about it. This is why so many people distrust doctors.  Connect with Amber: Amber's channel: Spincter of Oddi is Real Youtube   Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.      

Growing up in the shadow of Cape Kennedy, Adin Burroughs had designs on becoming an astronaut. But When Adin’s body started rejecting any food he ate with cramps, fever, vomiting, diarrhea - he of course went to his doctor.  In Adin’s family, a lot of people have problems with their gall bladder, and Adin told this to his doctor. The doctor ran some tests and declared Adin’s gall bladder as well functioning. But for the next few years Adin was not able to consume solid food and he lived on soup - all the while seeing numerous specialists in an effort to determine why his body was rejecting the foods he ate.  During the worst periods, Adin would have 27 hours of cyclical vomiting in which he wished for the sweet release of death. As if this wasn’t bad enough, Adin also has the neurological disease of MEcfs and it keeps him bedridden half the time. In this interview, Adin and I also talk about the relationship between COVID and MEcfs, and how the pandemic may be the best thing to ever happen to MEcfs research funding, care and support. SHOW NOTES: 0:04:30 Adin was born in Orlando, Florida - his parents were rock music promoters - but his parents divorced a couple of years after Adin was born - his mother remarried, and his step father is a college professor of psychology 0:05:30 Adin was entralled with the nearby by rocket launches and had aims to be an astronaut - but his health came crasing down in 2003 - he had 3 jobs and was on Reserve Duty in New Mexico, and flying to the East Coast to write distributed simulations 0:06:30 Adin went to the UK to present to the United Nations and then flew home, staying awake for 72 hours - when he got home, his wife was volunteering and he went to help her all day, still no sleep - was awake for 96 hours - and picked up a flu bug with others in his social circle, and half got CFS 0:07:30 Adin never recovered, he had myalgic encephalomyelitis / chronic fatigue syndrome (ME/cfs) - Adin was admitted to the hospital with 105 degree temperature - they gave him chilled IVs - Adin's job was like an air traffic controller 0:08:30 About half the people who got the flu with Adin, did not recover, a well defined cluster for studying - but Adin's doctor just shrugged when Adin didn't recover - after initially getting sick, Adin mostly recovered and went back to work - but his temperature flipping around - in the Air Force office they took a thermometer and could see his temperature cycle from 96 to 102 in about 10 minutes - they sent him home 0:09:30 Adin's wife had to come with him to meet the top brass and help explain what was going on as Adin had developed aphasia (inability to recall words / speak) 0:10:30 They discovered that Adin's body couldn't control its temperature over 75 degrees, so he had to stay in an air conditioned bubble - his wife quit her job at the University of New Mexico to shuttle Adin to doctors - they thought he had cancer, but couldn't find it - Adin suffered with tachycardia and low blood oxygen saturation, same problem Covid patients are having 0:11:30 Adin saw many specialists - Adin takes a medication to slow down his heart rate - he takes more than people with heart failure - it took about a hear to see the 6 or 7 specialists - Adin's mom was diagnsoed with MEcfs in 1992, so he knew what the symptoms looked like 0:12:30 When Adin's body temperature was so erratice, he thought he may have MEcfs, but hoped it wasn't - Dr Nancy Klimas helped Adin's mom, and then Adin 0:13:30 Adin's wife started to show ME symptoms in 2009, after the birth of their son - she had mild symptoms as first, but in the last year she's gotten sicker - Adin is bed bound about half the time, his wife is bed bound about a 1/4 of the time - she's still in the 'push - crash' phase of exerting too much and then getting sicker and unconscious for 8 - 10 hours 0:14:30 About 1.5 years ago, their 10 year old son started to show ME symptoms - its hard for a kid: he goes to the playground, but then literally falls over when he gets home and sleeps until morning 0:15:30 It is hard for adults with ME to learn to not over exert so they don't get sicker, but kids are supposed to be running around - Adin has his son use a Virtual Reality (VR) machine for tai chi, meditation, etc 0:16:30 Adin also had another medical error: in late 2000s, the ME caused him severe gut problems, he couldn't eat solid food for about a year - Adin was retired from all 3 jobs, but his employers fought over paying Adin, and it was 3 years without pay 0:17:30 So they lost their house, they lost everything - they had some volunteer lawyers help - during this time, it didn't matter what Adin ate, he'd get stomach cramps, a fever, then vomiting and diarrhea 0:18:30 Many of Adin's family has gall bladder issues, and tells his doctor this - Adin does a 'fat challenge' (eat a high fat meal) but it had no effect - after 1-2 years, Adin finally got a referral to a specialist at a hospital 0:19:30 They did a simple sonogram of his abdomen including his liver, stomach and gall bladder - they said Adin's gall bladder was normal - so Adin's GP started barium enemas for lower GI testing - Adin said its some of the worse testing he's been through 0:20:30 It was painful because they filled his GI tract and put it under pressure to see how it would react - the tech performing the procedure complained the entire time that he was working 0:21:30 Adin had a lot of testing - endoscopies, colonoscopies, biopsies, food challenges - but the symptoms were only coming intermittently, and then it would be a 27 hour cycle where he literally wished for death 0:22:30 Adin was in the military, he's been in PoW camps, he knows what pain is like - Adin has a friend who has HIV, and she says it is nothing compared to the horror of ME - but Adin's attacks were lasting 27 hours, the best the doctors could do was give him some meds to control the vomiting and nausea 0:23:30 But Adin needed to take them at double or triple the max dose - Adin was experiencing cyclical vomiting, kicked off by the gall bladder attack, in conjuction with the autonomic dysfunction caused by ME 0:24:30 The high doses of those meds were just enough to stop Adin from killing himself to escape the pain and suffering - Adin had said to his wife that he couldn't live that way - the attacks would sometimes also induce tachycardia 0:25:30 Adin had to go to the ER a few times, but they didn't know how to treat him, his heart, his vomiting - they were scared they were going to lose him - finally, Adin's doctor suggested Adin see a Mayo specialist in cyclical vomiting syndrome 0:26:30 Adin's evaluation at The Mayo was unlike anything in the regular medial system - he saw 5 specialists a day for a week 0:27:30 Mayo said that Adin's gall bladder is sludge - it is fine sometimes, but other times fills with sludge - it was easy to see on a common test 0:28:30 If Adin's doctor had of done the test, it would have cut 2 years of living hell out of Adin's life - Mayo also suggested that Adin's underlying autonomic dysfunction should be looked into, and they had him meet another Mayo specialist - but Mayo would never say anything about Adin's ME, even though he'd been diagnosed by leading doctors and had objective results 0:29:30 Instead, Mayo would only refer to it as autonomic neuropathy, either central or peripheral - or they would break it down and call it 'post viral fatigue syndrome' - Adin was able to gather from speaking to the staff off the record, that the Mayo had a policy they wouldn't see a patient who had MEcfs 0:30:30 Adin thinks Mayo had the anti-ME policy because they didn't understand it, they didn't have a black and white test for it, and the expense - most people with MEcfs are unable to work 0:31:30 A doctor from the VA (Veterans Affairs) wouldn't permit Adin to have a cardiology test because he refused to do an exercise stress test (exercise is contraindicated for ME) - a psychologist told Adin that he was medicalizing psychological issues 0:32:30 Adin would ask the doctors straight up: 'do you think I'm depressed?' - he wanted them to look him in the eye - they'd say 'no, not depressed' - Adin would ask if it could be MEcfs, and they'd say 'yes', but didn't do anything about it - patients with ME are marginalized, psychologized and traumatized - they are refused services, ridiculed, accused of lying 0:33:30 Most doctors get stuck on looking for a horse, when ME is a zebra - another analogy is 5 blind men feeling an elephant, none of them has the big picture 0:34:30 Adin hopes that an outcome of Covid is a systems engineer approach, to take a look at the whole body - it seems self evident medicine should already be doing it 0:35:30 Covid may be the best thing to happen to ME research - Covid is a systemic infection, and a sign it is like ME 0:36:30 Unfortunately, there are going to be a lot of Covid survivors who will understand what ME patients have been going through - at least now doctors are realizing that an infection can impact multiple systems - doctors just couldn't wrap their heads around that - they think polio was a one off 0:37:30 ME was initially called atypical polio - in spite of many medical discoveries, our knowledge of the human body is embryonic - they are just discovering how metabolites impact human health 0:38:30 Scott says HIV is a walk in the park, but with ME he can't even walk in the park - for Adin, his friend with both HIV and ME saying that living with ME was multiple times harder 0:39:30 She had experienced multiple trauma, but none of it was from HIV, and she was around in the 80s - she was traumatized by how the medical system treated her ME 0:40:30 Scott says that 99% of people with HIV and access to meds, are healthier than 99% of people living with ME - it was surprising for Adin to learn that living with ME was so much worse than living with ME 0:41:30 For the last few years on May 12th, ME patients globally have used their empty shoes as a symbol of the 'millions missing' from life, work, play due to ME - now COVID patients who have not recovered are also displaying their shoes 0:42:30 Scott says what would also help ME research, is if celebrities and politicians got COVID and did not recover, but develop ME - some celebrities have ME, but they hide it - Cher considers herself recovered 0:43:30 Celebrities have done the exact opposite of what they needed to do - a famous soccer player got ME, but didn't want to help the community - when Adin was volunteering with Pheonix Rising (a forum for ME patients / caregivers), he met a number of writers who did not disclose their illness because it would impact their career 0:44:30 The exception is Seabiscuit author Laura HIllebrand - but most don't 'come out' to let the public know that ME is not rare 0:45:30 There are parallels between ME and HIV in regards to internalized shame - in the early days of AIDS, the slogan was "Silence = Death" - but with ME, there is no high body count, it makes people more susceptible to death by other illnesses - there has only been one case of a death listed as due to ME 0:46:30 If Adin's mom was to die today, ME wouldn't even be mentioned on her death certificate - the medical marginalization of ME is deeply buried in institutions - for Adin and his family, the quarantine has had no impact - it is the rest of the world that is adjusting 0:47:30 But they don't have the nausea, pain and suffering that people living with ME have - humans react very differently when things happen to them personally 0:48:30 Adin deeply hopes that COVID patients recover and that we learn a lot more about how viruses interact with the genome, metabolome, mitochondria - we'll see if the opportunity is squandered or not 0:49:30 Scott wonders if his HIV meds is why he's healthier than most people with ME - a doctor said that people with HIV and meds who got COVID were not getting as sick as people without HIV (and HIV meds) 0:50:30 Adin is hopeful for remdesivir for COVID - and that the FDA will do its job   Connect with Adin: https://facebook.com/adindb   https://twitter.com/adin Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Evidently having a doctorate in physical therapy and working in the health care field does not protect you from medical incompetence, arrogance and errors. When Dr Jill Murphy went to the ER with potential stroke symptoms, the staff called the neurologist to examine Jill. But he refused, so the staff sent Jill away without a diagnosis, but with instructions to buy some baby aspirin. This was the first in countless medical encounters where Jill was disbelieved, dismissed or denigrated. Meanwhile, she continued to have countless mini strokes. Yet doctor after doctor failed Jill. They gave her a ‘conversion disorder’ diagnosis, saying her symptoms were all in her head, telling her husband that she must have been sexually abused as a child. But Jill is a smart and determined person, and her persistence paid off when she finally - years later - got a proper diagnosis that required a heart ablation and pacemaker and life-long medication.  Now Jill is using that same determination - and lessons learned from being a disbelieved patient - to raise awareness and education among the public and health care workers and will soon be publishing her first book, Physician Heal Thy Self. Connect with Jill: https://facebook.com/DrJillMurphy/ Twitter: @MotionWorksPT SHOW NOTES: 0:04:00 Jill grew up on a dairy farm in north east Wisconsin, so a big Packer fan - youngest of 3, and we were expected to work - we're German, so lots of work and lots of cleaning - lots of work on the farm, no matter how old you were - looking back it was great, I learned how to work, but as a child I would have rather been at the pool with friends 0:05:00 Jill went to Concordia University, north of Milwaukee, for Athletic Training and Sports Medicine - and Jill also got her Masters in Physical Therapy there - her father was supportive of academic and athletic pursuits 0:06:00 Jill has an amazing career in Green Bay, Wisconsin, and completed her Doctorate in Physical Therapy (PT), it was a lot of work but Jill loved learning - Jill met and married her husband, bought a house, had a first child 0:07:00 Jill had no health issues until she had started her own PT clinic, and it creeped up on her during her 3rd pregnancy - in her 20th week she had heart arrythmia and ended up in the hospital - but the cardiologist said Jill's heart rate was not 100, said she was not a cardiac case and walked out - thankfully her OB (obstetrician doctor) put Jill on medication - a beta blocker - to control her rapid heart beat - but she never got a diagnosis 0:08:00 Jill was still able to work and was teaching a 'build a better body' class - as she got more pregnant, the more short of breath she got and couldn't speak to explain the drills while doing them, so she had to stop that class - the doctor increased the dose over the summer because of the warmer weather and the increase in tachycardia Jill experienced 0:09:00 Jill was an athlete, a marathoner, active her whole life, os her resting heart rate was about 60 - but now she was getting short of breath and rapid heart rate with little exertion 0:10:00 Jill was assured that whatever was going on with her heart rate was due to her pregnancy, and once she had the baby, Jill's heart problem would go away and slowly wean off the medicine - after a few months Jill tried to wean off the medicine, but it messed with her blood pressure - Jill saw a nurse practitioner who was helpful for managing medicine, but Jill still didn't have a diagnosis 0:11:00 That was winter 2014 - Jill thought she'd have to be on the medication for the rest of her life, she couldn't workout - and she kind of gave up when the doctors weren't concerned 0:12:00 So Jill went to the nearby Mayo Clinic to see a cardiologist, who ran a bunch of tests 0:13:00 During the echo cardiogram the staff kind of rushed in and asked if Jill was an athlete - she didn't know it at the time, but she had some enlarged areas of her heart - they didn't seem worried, but a couple of weeks later they gave her a clean bill of health - that was summer 2014 0:14:00 Jill's primary physician moved, so she had to find a new GP - Jill remembers asking the new GP if there was a better solution for her heart problem so she could live a normal life, and the doctor's response was 'if you keep mentioning this heart problem, I'm going to diagnose you with anxiety' 0:15:00 A couple of weeks later Jill was watching tv and had her first transit ischemic attack (TIA), in the past called a mini-stroke, now known as a warning sign of stroke because the symptoms go away within 24 hours - as Jill watched tv her left arm and leg felt weird and heavy, she had trouble getting up from the couch and had to roll off it 0:16:00 Being a PT, she was trying to figure out what was wrong, she looked in a mirror and her face looked fine - Jill kind of knew what it was, but how could she go to the ER when the Mayo had just given her a clean bill of health, and her GP thinks she's anxious, so Jill went to bed - the symptoms were gone the next morning - she tried to read about possible treatments 0:17:00 Her 6 year old wanted to run the local 5k, so Jill ran it with her and she didn't want to quit and hamper her daughter's experience - they finished and Jill was so tired she didn't know how she could drive home safely 0:18:00 On New Year's Eve 2014, Jill had a busy day at her clinic then went to her dentist - the dentist injected Jill's gums with a pain killer and her heart started beating really fast, but it calmed down in a few minutes 0:19:00 That night after dinner Jill was very tired and went and sat down, but was too tired to read, and the numbness in her left arm, leg, face was worse 0:20:00 Jill was worried she was going to drop her 1 year old because she was so weak and tired - Jill tried somethings to bring back the feeling in her arm, leg and face - it was far worse than in the summer 0:21:00 Jill's husband took her to the ER, with 3 kids in tow - they identified right away as a code stroke, so they did a complete work up - the doctor congratulated Jill on 'selecting' their hospital to come to, as they were a certified stroke center - they did CT and MRI and other tests, but did not tell Jill what was wrong 0:22:00 Something strange also happened that night, only later would Jill figure out it was unilateral neglect, it means you don't want to attend to one side of your body - Jill spent the evening looking to her right side in the room, no desire to look left - a nurse helped Jill into a wheelchair because she couldn't walk - finally at midnight the ER doctor comes back 0:23:00 He tells Jill she can go home, but to stop at a drug store and buy some baby aspirin and take 4 of them and the symptoms will go away in 24 hours - Jill asked what was wrong, her left side was weak, she couldn't walk, but he just walked out without answering - so Jill asked the nurse what was wrong with Jill's body, but the nurse said 'we don't have any beds any way' - Jill wondered why they couldn't transfer her to another hospital, but she trusted them 0:24:00 But the symptoms didn't go away in 24 hours, Jill is still weak on her left side - Jill used to run marathons, but now after 1/4 mile her left side gets weak from neural fatigue and she has no sense of where it is in space, so she has to look where she puts her foot 0:25:00 So January 2015 was horrible - her ER form said she had a TIA (trans ischemic attack) and was to see a neurologist - 2 days later she went to see the doctor - Jill was limping as she entered the doctor's office 0:26:00 The doctor snarkily said 'why are you walking like that?' - when Jill said the notes later, the doctor reported that Jill was fine - Jill realized that reality and what doctors put in there notes were 2 different things - they wouldn't record anything that didn't fit their diagnosis - a couple of days later, Jill saw her 'headache' doctor, also a neurologist - he had known Jill for years, so knew she wasn't making up her symptoms, so he ran a bunch of tests 0:27:00 Jill had told all the previous doctors about her heart racing problems, but none of them paid any heed - Jill had a headache all of January, had a few more TIAs and a huge reaction to a medication where her throat almost closed no one could figure out - Jill couldn't really work during January 0:28:00 Jill didn't have disability insurance, so needed to get back to her business - she also kept trying to see other doctors but was given a 'conversion disorder' diagnosis - Jill had been given Topomax medication for blood pressure, but started researching its side effects 0:29:00 Jill started to have trouble reading, comprehending, thinking - she burst into tears in a McDonald's drive thru when she couldn't figure out how to order her daughter a happy meal - it kept getting worse over the next few days, she had trouble eating and chewing food - she told a doctor that her throat wasn't working, but they didn't care 0:30:00 The ER refused to give Jill a requisition to see a speech therapist in spite of their obviously being something wrong with her speech - they told her it wasn't a stroke, and told her husband it was probably because she was sexually abused as a child - Jill knew that was laughable 0:31:00 Because she couldn't swallow, she had stopped taking the topomax medicine, and her throat started to release, and she realized it was the medication causing the throat problem - but it took her about 6 months to get the conversion disorder diagnosis removed from her medical record - 'conversion disorder' is a term to describe psychosomatic, 'all in your head' 0:32:00 Jill didn't buy into that - when she stopped the topomax the symptoms of not being able to eat or swallow stopped - Jill continued to try to work, but her left side weakness tired her out quickly and she couldn't support her body without support for very long - she did more research about her heart arrythmia 0:33:00 Jill decided to drive 7 hours to a conference, in spite of her sketchy health and heart - but before she left she saw a electrophysiologist heart specialist and was fitted for a Holter monitor to monitor her heart and said Jill may have intermittent tachycardia, and off she drove 0:34:00 Over the next few months Jill gradually increased her workload and then saw the electrophysiologist again for the Holter results - it showed Jill's heart would go faster for no reason - but when Jill tried to make a follow up appointment, the doctor said she was fine and refused to see her 0:35:00 Jill continued to work on PT exercises, and started a walking program - she could still only walk about 1/4 mile before her foot started flapping - her husband took on a lot of household chores while Jill focused on recovering and keeping her business going 0:36:00 Jill saw some other neurologists, but to no avail in getting a diagnosis - she went to Mayo again, but it didn't go well, it was a poor clinical exam - then early May was a nice sunny day 0:37:00 and Jill thought 'maybe they're right, maybe its all in my head, if I pretend it doesn't exist, I can do my 2 mile run' 0:38:00 Jill made it about 1/4 mile before her left foot became fatigued, but she continued by walking - she got worse, the numbness was spreading up her left leg and slowly limped back home 0:39:00 Jill concluded that the stroke stuff wasn't 'in her head' after all - Jill was also having visual problems on her left side, running into things, it was part of the unilateral neglect - Jill went to visual therapy, but it made her nauseous sick every time 0:40:00 All the allied health professional could see Jill's deficits, but the doctors couldn't - over time Jill built up some endurance - but the day after she tried to run, her ankle hurt a lot and she ended up needing ankle surgery 0:41:00 Jill looked into the intermittent sinus tachycardia and found other tests she should have - she finally found a doctor in Iowa who put Jill on aberdeen medication, popular in Europe, recently approved in the US 0:42:00 It would reduce heart rate, without reducing blood pressure, and Jill had normal blood pressure - Jill hoped that controlling her heart rate would prevent anymore TIAs or strokes - it seemed to help, but was super expensive, 100s of dollars a month, so she was ordering it online, but it would take weeks for delivery - Jill tried to cut her dose until the meds arrived so she didn't have to pay $60 for 1 pill locally 0:43:00 And Jill had another TIA that day, so she realized her arrythmia and stroke were related - but it took forever for any physicians to recognize that - Jill saw another specialist, a breath of fresh air - he implanted a heart rhythm monitor 0:44:00 Jill was still having TIAs, still limping - the heart monitor was catching Jill's heart arrythmias - but Jill was still having them and had maxed out the dose on the medication 0:45:00 It took a couple of years for Jill to learn that a heart ablation procedure could fix the arrythmia - ablation is burning the part of the heart that is causing the arrythmia - Jill had to go through 7 doctors to get the procedure because inappropriate sinus tachycardia is the like the fibromyalgia of pain, no doctors want to see you 0:46:00 Jill had the ablation, but needed a pacemaker a week later - the ablation procedure runs a tube up the femeral vein to the heart, use their software to determine the origination of the arrythmia, and then burn out that area 0:47:00 Jill went into A-Fib during the procedure and they had to shock her to get heart beat back to normal - they found several areas on her heart for ablation treatment - Jill also had a spot on the outside of her heart that was ablated 0:48:00 Jill was hoping the ablations and pacemaker would stop the strokes, but they didn't - Jill continued to have TIAs, some scarier than others, trips to the ER 0:49:00 Jill continued to research and seek out specialists - she learned that people can have strokes before their first A-Fib (Atrial Fibrillation) - so still a grey and growing area of research 0:50:00 Jill went back to the original ER doctor - Jill was worried that others would receive the same poor and mistreatment - Jill should have been given TPA, a blood thinner that would have cleared out any possible clots - if she had been given TPA, Jill would be back running and leading a normal life - so Jill wrote a lot of letters to the hospital, but only their attorneys replied - she tried writing to their stroke committee, but no one responded 0:51:00 When you're dealing with a stroke the health system won't acknowledge, it is super hard mentally - she also didn't want people in her home town to know she was struggling because it would affect her business - Jill was trying to figure out what happened that night in the ER, why did they send her home? 0:52:00 Jill later learned they had paged the neurologist, but the neurologist decided not to come in - but the ER doctor had a good reputation, and Jill tried to figure out how this happened under his watch - so a few years later when Jill was in the ER again, this doctor is trying to figure out why Jill still has symptoms from a stroke - when she told him it was his mistake, he felt very bad and had her transferred to a better hospital by ambulance to get a thorough stroke work up 0:53:00 Jill says it was nice to see that he really cared, and that it wasn't his fault, that he had believed Jill - could he have pushed harder for TPA medication, or a transfer to another hospital, or make the neurologist come in - eventually Jill saw a cardiologist who put her on eloquist (an anticoagulant), and that with a baby aspirin has controlled her arrythmia 0:54:00 3 things are probably contributing to Jill's strokes: thick blood, a small artery, and heart arrythmia, so its not a black and white diagnosis - this spring Jill has had some right side TIAs, and now the doctors acknowledge that 5 years ago she did have a stroke 0:55:00 Jill's life before was having a TIA every other week and trying to decide 'how bad was it?' - it was not a good existence - but now she doesn't have those symptoms, her arrythmia is better, she's had some complications from the pace maker surgery - Jill has a new lease on life 0:56:00 Jill is back working - but she still has fatigue issues with her left side - she still has some vision issues which cause nausea, so she takes a medication for that - but can still only walk about 1/4 mile - Jill had to have a 2nd ankle operation 0:57:00 Jill has to use a motorized scooter for any activity that requires a lot of walking - she can't do prolonged standing or walking - its hard for a former marathoner to have to use a scooter 0:58:00 Jill says she's grateful for what she does have, it could be far worse - Jill has had to accept what happened in the ER years ago - she's learned you can't trust blindly, and that's scary, and she's in medicine 0:59:00 Jill says to push for answers and treatment - and to advocate for yourself - if she didn't advocate for herself, she'd be on disability or dead given some of the complications she's had - Jill has written a book about her experiences navigating the health care system, sharing tips and tools 1:00:00 Jill covers when she didn't get care, or proper care, or the best care, things that were missed - she's tried to go back and correct things, but you can't correct everything - Jill's attitude is to try to correct the things she can - she doesn't want to dwell on the things she doesn't have, but focus on being grateful for what she does have - and to help so people don't have her experience, especially young people with strokes - the highest growing cohort for stroke and most likely to be missed in post partum women 1:01:00 Jill is also working with cardiologists to recognize that it is not only stroke, but tachycardia to be looking for - so Jill is trying to bring something good out of something negative, making meaning out of her experiences 1:02:00 Jill has her 1st book manuscript finished, tentatively titled "Physician Heal Thy Self" - her 2nd book just needs 1 more chapter to be written - connect with Jill at DrJillMurphy.com Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When I first heard of laser eye surgery many moons ago, my first reaction was suspicion - on the face of it, it sounded very dangerous.  But after years of exposure to laser eye surgery advertisements, it squirmed its way on my list for consideration so that I didn’t have the bother of contact lenses. After interviewing Troy (a pabout his experience having his vision permanently damaged, and hearing what he’s learned about laser eye research and the ophthalmologist industry, I will never ever get laser eye surgery. The risks are just too great -- especially the suicide inducing pain of corneal neuralgia, where it feels like pins are constantly being poked into your eye. If you’re thinking about getting laser eye surgery, listen to what happened to Troy, and then take that into account in your decision. Show Notes: W5 Documentary: https://www.ctvnews.ca/ctv-national-news/video?clipId=1654087 Dentist awarded damages for eye procedure:   https://www.google.ca/amp/s/nationalpost.com/news/canada/dentist-awarded-5-6m-for-botched-eye-surgery-by-toronto-doctor-that-left-him-worse-than-before/amp FDA Official wants to ban Lasik: https://www.google.ca/amp/s/www.phillyvoice.com/former-fda-adviser-lasik-dangers-eye-surgery/amp/ Canadian class action lawsuit: https://lpclex.com/lasik/ Jessica Starr - meteorologist: https://people.com/tv/meteorologist-jessica-starr-suicide-family-speaks-out/ More info (Melanie B): https://lasikcomplications.com   RETINAL LASER COMPLICATIONS Troy's Facebook page: https://www.facebook.com/groups/640203739822311/?ref=share   Patient website-retinal laser complications:   https://patient.info/forums/discuss/white-flickering-light-after-laser-for-retinal-tear-516808   0:04:00 Troy (not his real name) grew up on a farm in Saskaetchewan in a normal family - great childhood, good parents who instilled good morals 0:05:00 Troy did have some flus as a child, but otherwise healthy until recently - he went to university and got a degree and become part of the rat race - he had a pretty good career with good friends and relationships 0:06:00 Troy wants to share his experience and what he's learned about laser eye surgery, including retinopathy, the procedure he had - Troy also wants to talk about the Canadian Medical Protective Association (CMPA), as its related to laser eye surgery 0:07:00 Troy has done a lot of research - Troy says lasers are dangerous weapons - the Geneva Convention has banned them in warfare - but lasers are approved by Health Canada and are used by lots of doctors 0:08:00 Troy's consent form for the procedure listed a lot of potential harms - a lot of information our brain processes, comes through our eyes - so if our eyes are injured by laser, it is an unnatural injury, unlike dirt, grim, etc 0:09:00 The retina does not heal, it has not evolved a regenerative capacity - there are a few different types of laser used in laser surgery - like in cataract surgery 0:10:00 The retina sits at the back of the eye - as we age, the retina can sometimes pull away from the back of an eye 0:11:00 This can cause 'flashers', a flash of light - it happens to a lot of people as they age 0:12:00 But Troy had 'floaters' in his vision and that's why he went to an opthamalogist in the first place, something he wishes he had never done - his floater was only in his right eye, and that was back in 2017 0:13:00 In retinalopathy, they will shoot the laser around the floater, the theory is that it will seal the tear (aka floater) so it does not grow larger and cause detachment - Troy had no problems with that procedure 0:14:00 In 2019, the opthamalogist tells Troy he has a small tear in his left eye 0:15:00 Troy thinks most people will have floaters, and will have some retinal tearing later in life - the procedure Troy had done was to stop the the tear from getting bigger, but another procedure tries to destroy the floater, but there is a risk to the optical nerve 0:16:00 During a laser procedure, you are awake, and if you move your eye during the laser, it can permanently damage your eye - Troy didn't want the 2nd procedure, but he was convinced 0:17:00 The procedure hurts, it is painful - the reason for the retinalopathy procedure is to prevent further tearing or detachment of the retina, but one of the risks of the prodecure is retinal detachment 0:18:00 Troy asks himself now, why did he sign the consent without asking questions 0:19:00 The consent form includes to circles representing the eyes to indicate where the procedure was performed - once the laser procedure is done, it is forever - there is no undoing it 0:20:00 From the 2019 laser procedure, Troy knew within a day or two someting wasn't right - he had visual disturbances - one moring he woke up in darkness, and as he moved his eyes, a fireworks explosion - that was disturbing 0:21:00 Troy also experiences symptoms when moving from bright sunlight to indoors, called 'while flickering lights' because his cones and rods (in his eyes) are misfiring - these happen every day, and flourescent light also set it off 0:22:00 Troy went to the doctor and was told they would go away in a month - then every time Troy went back, the doctor kept extending the date...3 months, 6 months -- but within the first week the doctor suggested Troy pay $100 to get retinal pictures 0:23:00 Troy wonders why the retinal pictures weren't done beforehand - even when he got the retinal pictures done after, he had trouble finding someone to read them - then he realized all these opthamaologists use lasers in one form or another, so they can't say there is a problem with lasers, when they themselves use lasers on patients - so its difficult to get a clear answer, so Troy has had to piece together what happened to him 0:24:00 Troy ascertained the doctor had made 4 strikes with the laser, but 3 of them were too close to the center of his eye, within his peripheral vision, so that's why he has these strange visual phenomenon 0:25:00 A problem common to all laser procedures, Lasik, cataract, etc, is dry eye - with retinopathy procedure, the laser passes through, and damages, the cornea to get to the retina, but the cornea usually heals - the eye is its own biosphere to protect against virus, dirt, etc - but when the cornea is dirsupted, it can cause dry eye, a major problem 0:26:00 Without proper lubrication in your eye, it is forever exposed to all kinds of infections - so Troy has to be very careful with his left eye, always has to clean it - so dry eye is a potential side effect of all laser procedures 0:27:00 Headaches, soreness, infections from dry eye - the toughest part for Troy is the flickering light in his vision - his father was a welder, so Troy wears welder grade sunglasses outside, so that when he moves inside, the difference isn't as big, and his symptoms aren't as inense 0:28:00 The welder lens is called a #5 lens - it was through experimenting that Troy discovered it helped him - as the sun goes down, the effect on his vision diminishes 0:29:00 It is most prevalent in the middle of the night - Troy says Lasik and PRK procedure patients have a lot of trouble at night, especially driving as they see star bursts, so it makes it impossible for them to drive at night - these are elective surgeries 0:30:00 The drops for dry eye costs $35 a month, and it will be needed forever - so not really saving money over buying glasses that can last for years...and your eyes don't hurt 0:31:00 Troy is sharing so other people know about these potential problems - as he researched, he found there wasn't much info about the procedure he had done (retinapathy), but he did find some research on Lasik and PRK - and there are 100s of 1000s of people suffering and committing suicide - there is a horrible illness called corneal neuralgia caused by Lasik 0:32:00 Troy says there is a great program on W5 (tv show) called Deadly Vision about the risks of Lasik - Troy says anyone who watches that and still wants Lasik is crazy - corneal neuralgia is like needles sticking into your eye all day long, extreme pain - a meteorologist in Detroit committed suicide a few weeks after Lasik surgery - a millionaire in Ontario was in so much pain he took his own life 0:33:00 A young man in military, took his own life because of corneal neuraglia - Canada says its 1 in 10,000, and there are 80,0000 procedures a year, so that's 8 people - but nobody knows the real numbers because there are no independent studies - and cataract surgery is like Lasik, so the same risks apply 0:34:00 Most cataract surgery is on senior citizens, so any symptoms they have attributed to old age - Troy thinks people should understand the risks of that surgery 0:35:00 Troy says we have to remember that all this info comes from the corporations that make the laser equipment - most of the opthamalogists operate as independent and there is a lot of money they are making, but there is no indepedent accountability - most of the eye clinics operate outside the provincial jurisdictional and regulatory system 0:36:00 If you go to a private eye clinic and then have a problem and go to the ER, they will tell you to go to the private clinic, except the private clinic doesn't offer after care - they make money off the procedure, but if you need after care, you have to go to the regular system - the only thing they can offer is anxiety meds 0:37:00 Troy thinks unless you have an emergency, be careful about having an eye procedure 0:38:00 Some people have had success with the procedures, but there is also the risk - Troy wants to warn people, they should think twice because there is little info about retinopathy risks 0:39:00 A former approving FDA official said publicly that laser eye surgery should be outright banned - his research shows complications up to 30% - but the eye doctor say less than 1% - the Canadian Opthamology Association says corneal neuralgia is 1 in 10,000 0:40:00 There are all kinds of other problems - dry eye, vision problems, blindness - so 1 in 3 people are going to have a problem - talk to people with Lasik procedures, and many will tell about dry eye - Troy tried to tell the CNIB (Canadian National Institute for the Blind) about the laser injuries, but they didn't care 0:41:00 Troy knows of a woman who started to go blind after Lasik surgery, the doctor gave her a business card to the CNIB and said good luck with that 0:42:00 There is a lot of money in the business, as they advertise a lot on Facebook, there ads are always popping up - there is a class action lawsuit in Canada against one of the Lasik companies, LasikMD, for corneal neuralgia sufferers - but it doesn't include the other providers of Lasik 0:43:00 Troy thinks the government should be looking into the quality of work and research by the manufacturers - the research is often funded by the company that will make money off the product - Troy thinks Health Canada would be keeping people safe 0:44:00 But you will hear a lot of people who had successful Lasik surgery - while the retina doesn't heal, the cornea has evolved to heal itself, and that's why there is success - but some people's cornea doesn't heal 75:00:00 Apparently there are more nerves in the eye than any where else in the body, and that is why corneal neuralgia is so painful - but where is the data and research - there are probably millions of people around the world suffering from Lasik procedures 0:46:00 Troy has some recommendations, wishes someone had told him before his procedure - he likens it to taking your car to the mechanic and he shows you the broken part they will fix or replace, and won't do more work without your approval 0:47:00 Troy thinks a picture of the retina should be taken before deciding on the procedure so the doctor can show you exactly what and where the problem is 0:48:00 It only takes few minutes, they all have retinal cameras in their office - its your right to ask for that - and agree to whatever areas you want treated 0:49:00 Also consider if the area is within your field of vision - providing a retinal picture before the procedure is not part of their standard operating procedure 0:50:00 Retinal pictures after the fact have little use - Troy doesn't know if he was charged per laser strikes (4) or if for the whold procedure 0:51:00 It took 2 minutes, but it cost $500 - but there is no undoing Lasik surgerey 0:52:00 Troy has seen pictures of people who have had thousands of laser strikes - laser attaches the retina to the back of the eye 0:53:00 The medical malpractice set up in Canada is different than other G7 countries - Canada has more medical errors than the others - it is almost impossible to sue a doctor in Canada 0:54:00 A lawyer told Troy that any harm listed on a consent form is there because it has happened - Troy says it is important you have informed consent - in Canada, each provincial health agency pays the CMPA with tax payer dollars 0:55:00 Lawyers has $5 billion of tax payers dollars, and they have hired almost every major law firm in Canada, so they can't represent you 0:56:00 So finding a lawyer if very hard - and they want to make sure they are going to be paid, so it has to be a horrific case - a lot of the award in a malpractice is for lost future wages, so a lawyer needs a client that had a high salary 0:57:00 Back in early 1900s, the law was made to constrain a medical malpractice awards to a small amount - it is also hard to find an expert witness, as doctors are reticent to testify against each other 0:58:00 But the CMPA will hire 5 or 10 experts, because they know that if you lose, you have to pay all their legal fees plus their expert fees - that will bankrupt you - Troy calls it triple jeopardy: tax payers pay doctors and pay CMPA and pay your own legal costs 0:59:00 If you lose, you also pay their legal costs - so its not surprising that only 60 cases go to court, but only single digits win their case - so the chances of winning are so low, that it makes it virtually impossible, statistically zero. 1:00:00 Troy says people shoud avoid getting elective laser eye surgery - Scott says he'd thought about having Lasik, but 10 minutes into hearing Troy's experience and research, he's decided he's never getting laser eye surgery Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Until I started doing this podcast, I was mostly ignorant to the extent of the harm sometimes caused by psychiatric and antibiotic medications. In spite of my own 2 week experience with disabling withdrawal symptoms from an antidepressant 20 years ago, and contemporary reports of withdrawal symptoms from friends and clients, I still had no idea how pervasive - and sometimes permanent - these brain injuries were. As frightening as that was to learn, the prescriptions for psychiatric medication for depression and anxiety have soared in during the COVID pandemic.  And let’s face it folks, we are still in the early stages of the pandemic - if we get blue skies with double rainbows we may have a vaccine in 18 months, but that’s really wishful thinking - the global economy has taken an unprecedented hit, and that means many people’s jobs and financial security are going to be at further risk. This will only add to the feelings of anxiety -- but let’s be clear, it is normal to feel anxious about how the world is suddenly changing in so many ways. Learning coping skills, having strategies to feel more safe in an unknown future, and using supportive relationships are natural ways to feel better about feeling anxious. In this episode, we hear what happened to Jocelyn Pedersen after taking a benzodiazepine for less than a week. Jocelyn was so physically sick from the benzo brain injury, she had to spend much of the time horizontal on the floor with her baby while her neighbour’s helped with household chores. Jocelyn’s body was a complete mess: she couldn’t sleep, eat, watch tv, read, her bowels were dysfunctional and she was losing weight fast. That’s just the start of Jocelyn’s journey with benzodiazepine medications -- a medication journey, as Jocelyn describes, that goes through madness. Jocelyn’s health care experience is a textbook example of how the medical system pushes psychiatric medications without understanding how the meds can cause brain injury. This often leads to doctors denying side effects or withdrawal symptoms, effectively gaslighting the patient, psychologizing physical symptoms, and pathologizing human emotions. It was a long arduous road for Jocelyn to get back to her usual high functioning self, and along the way she started sharing her experiences and what she learned and now Jocelyn has a large following on social media. On her YouTube channel Benzo Brains, Jocelyn shares real world information about benzodiazepines and strategies on successfully managing the withdrawal symptoms. Jocelyn has just written a memoir about her experiences with benzos and the health care system called “Seeds of Hope: A Journey Through Medication and Madness Toward Meaning”. Available on Amazon: https://t.co/267G0VaBiz?amp=1 Connect with Jocelyn Pedersen: People can pre-order Seeds of Hope: A Journey Through Medication and Madness Toward Meaning through moongladepress.com and when it's released June 1st on Amazon.com: https://t.co/267G0VaBiz?amp=1My channel is YouTube.com/c/BenzoBrainsSome other helpful resources are benzoreform.orgbenzoinfo.combenzo.org.uk/manualcouncilforsustainablehealing.org SHOW NOTES:   About Jocelyn Pedersen: After experiencing a severe injury to her brain and body from prescription medications, Jocelyn co-founded the non-profit, Benzodiazepine Information Coalition. She is a speaker at CME's and continuing education courses for doctors and healthcare providers on the dangers of benzodiazepines and how to help patients safely withdraw. Jocelyn is also subject in the upcoming As Prescribed documentary film and the author of Seeds of Hope: a Journey through medication and madness toward meaning. When she's not busy managing her Benzo Brains YouTube channel or serving as an advisor to The Alliance for Benzodiazepine Best Practices and The Council for Sustainable Healing, you can find her rocking out to big band music and forcing her kids to watch MGM musicals with her. 0:06:00 Jocelyn grew up in Pueblo, Colorado and her childhood was mixture of good and bad things, mental and physical abuse - but also grew up with a lot of spiritual support at Church of Jesus Christ of Later Day Saints and it stabilized her and taught her to overcome 0:07:00 Jocelyn got an academic scholarship to Brigham Young University so she moved to Utah and she loved college and graduated with a BS (Bachelor of Science) in childhood educations - college was a way to escape and re-start her life 0:08:00 Jocelyn got married and they moved to North Carolina and they had their first baby, but he passed away, so they decided to move closer to family for support and moved to Utah 0:09:00 Jocelyn started teaching at a local school for 2 years until she got pregnant again - she writes about her experience in her memoir that will be released in June: "Seeds of Hope: A Journey through medication and madness toward meaning" -- a couple of years later she had another baby, a girl to go with a boy 0:10:00 Jocelyn's father was a chiropractor so she grew up with a healthy distrust of allo medicine - but her story really starts when Jocelyn sought out a sleeping pill from her doctor - her baby daughter was in the hospital with meningitis, and then her toddler son was admitted to the hospital twice, so Jocelyn was not getting enough sleep - the economy was bad at the time, her husband was out of work 0:11:00 The doctor prescribed Ambien and assured Jocelyn it wouldn't pass through her breast milk to her baby - Jocelyn doesn't like taking medications, but thought she'd take it temporarily to get back into her sleep cycle 0:12:00 But within a couple of days, Jocelyn could tell her baby daughter was being affected by the Ambien - after 5 or 6 days Jocelyn stopped the Ambien and that's when things fell apart and her insomnia got much worse, she had ringing in her ears, running to the bathroom all the time, couldn't eat, losing weight, couldn't read a book, watch tv, and suddenly also had pain and couldn't even go for a walk 0:13:00 Jocelyn had a bunch of tests done but they all came back normal, so no explanation, except being told 'you have post partum depression', or 'you're having a nervous breakdwon', or 'you have anxiety' - but Jocelyn knew about depression from the death of her first baby, and this wasn't that 0:14:00 After about 4 months of literally lying on the floor with her baby and neighbours coming by to help - Jocelyn had been a high energy person: running, yoga, working out - but then she started to get suicidal thoughts 0:15:00 Jocelyn was told by the doctor she had major depressive disorder and an anxiety disorder and was given Effexor and Ativan - the first day she took the meds she slept well for the first time in 4 months - only later would Jocelyn realize that Ativan is practically the same as Ambien 0:16:00 So the Ativan stabilized the injury from the Ambien - originally Jocelyn was only to take the Ativan for a brief period, but the doctor increased the dose to 2 mg - 'it was like magic', Jocelyn felt better, like her old self, except for the pain, which was diagnosed as Fibromyalgia, and she was given Cymbalta for the pain - so for the most port Jocelyn was able to lead a normal life, she was a believer that she must have needed the meds 0:17:00 Jocelyn had studied and learned a lot about natural medicine and didn't like the idea of continuing to take Cymbalta, and it put weight on her 0:18:00 But the doctor would say, 'don't stop the Cymbalta until you've stopped the Ativan, now Lorazepam - but every time she tried to cut down, her symptoms would get worse, she couldn't sleep - so she stayed on them for another 3 years - but eventually tried to wean off again - she did stop progesterone cold turkey and got really sick 0:19:00 Her blood pressure sky rocketed, she gained a lot of weight, and falling asleep in the middle of the day - so she cold turkeyed it and the first time she experienced full on crazy, shaking all the time, and couldn't function 0:20:00 Jocelyn realized later the Cymbalta had really messed with her blood sugar and that's why she had put on so much weight - Jocelyn successfully weaned of the Cymbalta, but was still taking Lorazepam at night, but she and her husband wanted to have another baby but the literature said that Lorazepam could cause birth defects - they decided to go ahead and try to have another baby and that Jocelyn would try to taper off the Lorazepam 0:21:00 But Jocelyn later learned it doesn't really cause birth defects, but can cause of miscarriages if stopped to fast - Jocelyn did get pregnant and started to taper by 1/8th 0:22:00 Just cutting an 1/8th of a mg caused intense disabling symptoms: couldn't shower, read, watch tv, losing weight, and anxiety of a whole other dimension 0:23:00 It was torture, and then she had to cut the dose again, and then again - by the time Jocelyn got to half way she was ready to give up and kill herself because she couldn't handle the unending torture - luckily her husband started researching online - because Jocelyn couldn't - and found BenzoBuddies.org and Benzo.org.uk and he found the Ashton Manual, which a lot of people use to withdraw 0:24:00 They realized that Jocelyn wasn't crazy and that a lot of people were having the same experiences - and Jocelyn was probably tapering too fast - Ativan has a half life, so Jocelyn would experience sudden symptom onsets daily - so she switched to a longer lasting benzo to complete her taper 0:25:00 At the time, Jocelyn was too sick to go to the doctor - the next time she saw a doctor was at the ER when she thought she was having a miscarriage - they brought the Ashton Manual and requested Valium to stabilize Jocelyn, the doctor was resistant but finally agreed 0:26:00 The Valium provided some relief, but it was still hell and she didn't feel like she was going to take her own life - her family has seen Jocelyn struggle with Ambien withdrawal a few years before, and hearing the testimonials of others, helped them all to understand 0:27:00 Jocelyn had been drug injured with Ambien, but misdiagnosed with anxiety and depression - Jocelyn's doctor, a friend of the family, did not recognize withdrawal symptoms of Ambien 0:28:00 Jocelyn did have a miscarriage, which she is thankful for in some ways as she wasn't well enough to take care of a newborn at the time - Jocelyn continued to taper 0:29:00 Jocelyn tried various versions of tapering before discovering water titration, which she shows how to do on her YouTube channel - she had learned that in Facebook support groups - Jocelyn did reach out to mainstream medicine, she has a chapter in her book called 'Physician Heal Thyself' - all the doctors thought they knew about withdrawal, but none of them did, and none of them had read the Ashton Manual 0:30:00 One doctor told Jocelyn that she just couldn't handle being a Mom and should take some Prozac - the only doctor who was reasonable was Jocelyn's family doctor, but all he was willing to do was to prescribe the Valium 0:31:00 But when he was gone and Jocelyn had to deal with one of the other providers at his clinic, she was given the 3rd degree every time - it took Jocelyn about 18 months to taper off 13 mg dose of Valium - the newer benzos are many multiples more powerful then Valium, yet its the the Valium doctors are hesitant to prescribe 0:32:00 Jocelyn had to learn to accept where she was during the taper, that she had a brain injury - she also had support with the kids during the day, when her son started back to school... 0:33:00 she reached out to people in her church community and a different family came over each day to help her - Jocelyn does not know how she could have managed without community support because her husband was working 2 jobs 0:34:00 The big turning point for Jocelyn was finding a functional medicine doctor, a ND (Naturopathic Doctor) - she found one in her area and helped her with her benzo belly - he did tests that allopathic doctors don't do 0:35:00 He was able to pinpoint deficiencies - she started on a high protein diet because she was hypoglecemic - after about a week on his protocol Jocelyn started improving a lot, sleeping well 0:36:00 Then her son was prescribed an antibiotic and it injured him - it was like deja vu: once again no doctor is believing them - turns out her son developed an autoimmune illness and is allergic to everything - he was a normal boy, running and playing, then suddenly he's in a wheelchair and crying out in pain every few minutes 0:37:00 The paedeatric allergist said her son always had the autoimmune illness, refused to believe it was caused by an antibiotic - but the functional medicine doctor was able to help cut down on the inflammation and allergic reactions, but they are still figuring it out - he has a lot of trauma from that, and from a Mom who was disabled twice in his life - Jocelyn had to learn not to give power to health providers, and to heal herself 0:38:00 Yoga, meditation, diet, stem cell therapy for trigeminal pain -- nerve pain in her face -- it literally hurt to breath - the stem cell was very helpful, but she has to go back every 4 months or so as the pain comes back 0:39:00 How can someone help you if they don't even believe you? -- some doctors are open, but plenty are just closed minded 0:40:00 During her taper, Jocelyn was asked to be a moderator of a Facebook group, so she helped people find resources - then another friend asked her start another group to help people apply for disability or medical malpractice suits or correct medical records - Jocelyn realized they needed some 'weight' behind them, as they were 'just' sick patients, so Jocelyn suggested they start a non-profit 0:41:00 The Benzodiazepine Information Coalition - but then her son got sick and she had to step back to care for and home school him - but it was toward the end of her taper that she made her first Youtube video, just for her friends in the support group - and it got lots of shares - then when she was frustrated with doctors she made another video and that was picked up by Mad in America, and things just picked up 0:42:00 Her videos help people with brain injuries and their families get the support then needed - her Youtube channel is Benzo Brains - Jocelyn is doing really well. now, living life fully - she does get more stressed out physically 0:43:00 Her body is kind of delicate now, but she is really happy, with peace and joy - but if she doesn't get enough sleep or eat write, a dark blanket descends on her brain, but she knows it is only temporary - but it is painful having a son who is still suffering, but she's not coming from a place of fear 0:44:00 Jocelyn believes the suicidal thoughts that came from withdrawal are product of the medications causing the repeated thought 'kill yourself, kill yourself, kill yourself' 0:45:00 Most of the people dealing with withdrawal are good people, just doing what your doctor told you - Jocelyn was asked to speak in 2017 at the benzodaizipine medical symposium for doctors 0:46:00 Jocelyn met a lot of wonderful people, including a woman, a benzo survivor, who asked Jocelyn to write a book - initially Jocelyn declined but then thought it could be a good tool to get the message out there 0:47:00 It took a while to write while taking care of kids and her own healing journey, but it will be published June 1st - Seeds of Hope: A journey through madness, medication and meaning - she wants to give people hope that are in the same situation 0:48:00 The publisher approached Jocelyn to write the book - some of her benzo awareness efforts have been black balled by google or facebook or youtube 0:49:00 Obviously there are forces out there they do not want this information in the public spere, but Jocelyn believes there also people out there that know something is wrong - benzo perscriptions have increased 10 fold over the last decade - doctors are just substituting benzos for opiates - so big pharma's profits increased by 10 fold - since COVID, anxiety meds prescriptions have increased 34% 0:50:00 Alliance of Benzo Best Practices is a group of doctors who understand, and researchers who want to do research for the FDA to change recommendations, and to re-educate doctors on these drugs 0:51:00 The stuff pharma puts out, does not warn people about what these drugs can do   Connect with Jocelyn Pedersen:   People can pre-order Seeds of Hope: A Journey Through Medication and Madness Toward Meaning through moongladepress.com and when it's released June 1st on Amazon.com: https://t.co/267G0VaBiz?amp=1My channel is YouTube.com/c/BenzoBrainsSome other helpful resources are benzoreform.orgbenzoinfo.combenzo.org.uk/manualcouncilforsustainablehealing.org   Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Imagine back to when you had a bad flu. Remember the nausea, head spins, pain and soreness, vomiting and diarrhea, and crushing fatigue? Remember how the worst lasted for a few days? Now imagine having that flu for a few weeks. Or a few months. Or like Jeffery Smith, for a few decades. Now think of the millions of COVID patients. A good number of the survivors are not fully recovering from this ‘flu’ bug. They remain sick for weeks. Soon they will have been sick for months. And if they are unlucky like Jeffery, they may be permanently sick and disabled, and the health care system will effectively abandon them. Most doctors didn’t take Jeff’s ongoing flu symptoms seriously, dismissing them and subtextually blaming Jeff for being emotionally weak, or not trying hard enough, or not really wanting to be healthy. You know, gaslighting. So when Jeff started to have bowel symptoms, he didn’t tell his doctor. Who needs to be invalidated and gaslighted? But it turned out Jeff had a tumour and needed surgery and suddenly the health care he received was empathic, prompt and validating. A stark contrast to the years of dismissal and gaslighting of his flu symptoms. As Jeff explains, the tumour for which he received exemplary care only impacted his quality of life a fraction compared to how the never ending flu shattered his future. And as the COVID deaths and infections continue to rise, the people who do not recover may also experience disbelieving doctors, and a health care system that doesn’t care. SHOW NOTES: 0:06:00 Jeff grew up in a small hockey town in Campbellford in Canada - and Campbellford in the 70s was more like the 50s, it was an alternate universe 0:07:00 Jeff's childhood was traumatic - he was gay living in a small town wherebody played sports or worked on the farm, where Jeff liked to watch old movies, like with Lauren Bacall, and draw their dresses - so school wasn't a safe place, and home wasn't safe because his mother had emotional issues and had a traumatic childhood, so Jeff didn't feel safe at school or home 0:08:00 Jeff didn't feel safe until he moved to Toronto for college - he was not liked by other kids because he was 'other' - but when he came to college he was suddenly popular even though he was the same person, so that was confusing and fascinating - Jeff always thought he'd not live long 0:09:00 Jeff was very sick as a child - 9 convulsions before he was 5 - doctors found Jeff had really bad allergies - they put an air conditioner in his bedroom, and Jeff felt better in the room so spent much of his time there, especially in the summer - if he went outside the heat would cause convulsions - so as a boy, Jeff got in his head he wouldn't live long 0:10:00 In grade 9 Jeff missed 3 months of school due to the flu - he started allergy shots when he was 5 years old - those helped, and the convulsions stopped 0:11:00 But in grade 9, the non-stop flu for 3 months came with fever, swollen glands, etc - when Jeff got over that and everything was okay until he got mononucleosis at age 19, during the summer 0:12:00 For 2 months Jeff couldn't really lift his head off the pillow - he had to pee in a pail beside him - it lasted 2 years of fevers, night chills - it was 1985 and the AIDS pandemic was just emerging and Jeff thought he must have AIDS, even though he'd never had sex 0:13:00 So doctors could see by Jeff's symptoms including swollen glands, that he was sick, they just didn't know why - it was rought to transition during the mono to move from home to Toronto and go to college 0:14:00 Jeff would go to school and crawl into bed after - so it was challenging, but he loved the subjects and the positive attention and learned some of his own value - Jeff remembers wondering if he had irritable bowel syndrome (IBS) because of the diarrhea, easily 10 times a day, every day for 2 years - so that meant leaving class, getting up in the middle of lunch, etc - yet trying to appear healthy and normal 0:15:00 But life was really good - trying to find a career, had lots of friends - Jeff's health was okay during this period, from 21 to 30 with okay-ish, but some bad periods with bad allergies - including missing 3 weeks one time 0:16:00 One time Jeff bought a plant, but didn't realize for weeks that that was what was making him sick - but Jeff was told my different doctors he had 'post viral malaise' - Jeff was working in a bank to earn a living 0:17:00 Then he met his partner, who would become his husband, and that's when his life really started - Jeff was 24 when they met, and Jeff was enjoying relatively good health - Jeff's allergies are anything in the environment, plants, trees, grass are the worse - he was on shots for 24 years and tested regularly 0:18:00 Jeff always scored the highest on allergy testing for grass, trees, mold, pets - Jeff lived on daily allergy pills for decades - the weather changes really affect Jeff too - so its really bad now, in the spring - it also affects his immune system 0:19:00 Jeff's immune system has been over worked since birth, so he's interested in how that realtes to mast cells - in Sept 1996 Jeff caught the flu, the regular bad flu 0:20:00 That flu has been with Jeff every day since Sept 1996 - Jeff says that if you think back to when you had the bad flu and remember how you felt - head spinning when you were not laying down, having to hold onto things - chills in your body, pain, dizzy, fatigue - fatigue so bad that you wait 20 minutes to turn over - if people can remember those feelings, and that that lasted maybe 3 days 0:21:00 Take that to 3 weeks and nothing changing, nothing getting better - then try to imagine getting up, putting on clothes while you're sweating, holding onto the sink - getting yourself to the bus, streetcar, subway, but not having the energy to stand, and having to lean - trying to make it through the work day, but not meeting your obligations, cognitively or energy wise -- now extend that 3 weeks to 3 months and you're still not better and people at work are saying your performance is down 0:22:00 And your doctor at 6 months keeps saying post viral malaise - but you can barely work, cannot watch an hour tv show - but its been 23 fucking years at that level for Jeff, with full on flu - so that's the only way Jeff can describe what happened to him in Sept 1996 0:23:00 Jeff has the same flu symptoms, some more severe, as 23 years ago - that is Jeff's reality - Jeff describes his symptoms as a constant orchestra 0:24:00 Jeff used to have good days and bad days, but now he has perhaps a few good hours each week, and the rest is bad 0:25:00 Jeff's had 3 GPs, plus lots of specialists -- but the GP at that time - 1996, pulled out a list that said 'Chronic Fatigue Syndrome' - Jeff did not have constant sore throats, but had all the other symptoms, but the doctor said that Jeff could not possibly have CFS if he did not have a sore throat 0:26:00 The doctor said Jeff had 'nerves' and some people just aren't as emotionally strong as others, and life is hard, and so what you need is a psychotherapist and a relaxation class 0:27:00 Jeff was so sick and desperate and grabbing at straws, so Jeff did therapy and relaxation classes - while they didn't help his physical health, they did help in other ways 0:28:00 But not one of them has moved his illness 1 per cent - Jeff's doctor retired, and his new GP took Jeff more seriously and sent Jeff for other testing - but there was always the overarching theory that the problem was Jeff: he was gay, overly sensitive 0:29:00 Jeff has learned through this health journey everyone wants to put you in a box - but if people had of paid attention to 'chronic fatigue syndrome' instead of calling it 'yuppie flu', he wouldn't have lost a quarter century of his life - Scott says that many people with ME (myalgic encephalomyelitis) have it develop from a flu that never went away 0:30:00 The COVID patients who do not recover are showing ME symptoms - however, it is less likely their symptoms will be dismissed with psychological bullshit because of the global onset - Jeff says from the SARS pandemic we learned that 17% of patients could not return to work at all, and 87% of not fully recovered 0:31:00 With milloins infected with COVID, without a doubt many more people will be sick with ME - COVID could be the best thing to happen to ME - there are already about 600,000 Canadians with ME 0:32:00 But there are many more people who are not diagnosed - Jeff remembers a woman from his childhood who was sick in bed for 30 years, and nobody knew why, but the narrative was that it was because she was a woman 0:33:00 Jeff feels for how this woman must have been so misunderstood for all those years - while therapy helped Jeff with his emotional life, it did nothing for his physical symptoms 0:34:00 Therapy does not stop Epstein Barr Virus from replicating in your body - even Jeff and his husband thought maybe Jeff was just really depressed but didn't know it - but every sign indicated jeff wasn't depressed - he enjoyed activities, his friends, he was optimistic - he was sick in bed and sad, sad because he was sick and in bed, not because he was sad 0:35:00 One of the elements of ME is bowel problems and IBS - in the late 2000s Jeff started to experience IBS symptoms again - but with ME, because it is multi-system, the habit is to attribute any symptom to ME, and to not tell you doctor because of the 'eye roll', as in 'here he is again' 0:36:00 Jeff got to the point where he was thinking, 'no one can help me, I don't want to be looked at as crazy, so he didn't mention it to his doctor - Jeff ignored the symptoms until he couldn't ignore them anymore - his doctor sent him for a colonscopy and they found something 0:37:00 Jeff was diagnosed with a rectal tumour and he had to have a bowel resection operation - basically they removed 95% of his rectum and he was on an ostomy bag for 6 months, but then had a 'reversal' operation and doesn't have the ostomy bag anymore - but the tumour only impacted about 20-30% as much as the ME 0:38:00 But as soon as he got that diagnosis, it was like he was in another world, another twilight zone, another life because he received help, understanding, empathy, support - it was strange compared to ME health care - Jeff really needed the reversal surgery because of the time and energy it takes to use the ostomy bag, clean, change while standing up 0:39:00 Jeff has POTS as well, so standing is a real challenge - he had a nurse for a while for the ostomy bag, but the real problem was the ME, and there was no help for that - Scott says there are 2 health systems: if you have cancer, or HIV, or a broken leg, you can usually get pretty good care - but if you have ME or something else they don't know about, you get pretty shitty care 0:40:00 When they don't have a pill or an operation, they says its in your head and they think they've cured you, they just don't want to tell somebody "I don't know' - if somebody had of said that to Jeff, his life would have changed - he wouldn't have spent 25 years beating himself up as not being good enough, not trying hard enough - Scott asks Jeff when he knew he was being gaslighted? 0:41:00 Jeff says when he saw the 'chronic fatigue syndrome' list of symptoms and he had them all except one, he figured he had it and that was in the back of his mind, but he always responded to whatever the doctors said was the problem - but the epiphany was around 2015-16 when Jeff went to Stanford chronic fatigue syndrome clinic (aka ME) in California - so 20 years after the flu started 0:42:00 When Jeff got to Stanford he first saw a nurse practitioner who had reviewed Jeff's file, the first thing she said was 'I apologize for all the medical abuse you've received from the medical community' 0:43:00 Jeff had 20 years of grief that he never expressed, because he was never told medicine made a mistake - Jeff hugged her because he didn't know what else to do - it changed his life hearing that - Jeff paid for an expensive panel of blood work - the results showed Epstain Barr Virus higher than anyone they'd ever seen at the clinic 0:44:00 For the first time Jeff forgave himself for not trying hard enough - all those years of struggling to work, only to be remprimanded for not doing well enough - Jeff took a moment to recognize that he did all that even though he was so fucking sick, and sicker today because of it - getting the blood work back showing the infections was validating 0:45:00 The layman's interpretation of what is happening, is that the Epstein Barr Virus (EBV) is replicating every 24 hours, as its been doing for 23 years - the diagnosis all made sense - the nurse started to cry too 0:46:00 Because Jeff was steadily getting worse - and this is something often not talked about, it is the people who are too sick to have a voice, literally too ill to speak 0:47:00 Jeff has periods where talking is so draining, uses so much energy - Jeff did not leave his bed for the previous 4 days, to rest up and sit up for this interview - but Jeff says he knows of so many people who are completely bed bound and cannot communicate, even on the internet - they are still there and breathing, but they don't exist otherwise 0:48:00 Severe ME has been described as like the last days of dying of AIDS or cancer - in and out of consciousness, speak very little, just like ME 0:49:00 Jeff's friend read about the Stanford chronic fatigue syndrome clinic and told him about it - Jeff took the article to his doctor, and the doctor read the article, looked up at Jeff and said 'You have myalgic encephalomyelitis' 0:50:00 At the same time, Jeff was trying to get an appointment at the Environmental Health Clinic at a Toronto hospital - it took 3 months for Jeff's Stanford appointment, but he had to wait 19 months to get the Environmental Health Clinic - the experiences were not similar 0:51:00 Jeff had to forgive himself and the medical community - like MS was called hysterical paralysis before the MRI - and we know that how people with ME are treated by the health care system causes them to kill themselves - there is no treatment, no empathy, no hope 0:52:00 And it was at that time that Jeff started advocacy, he needed to do something, in his own way with own limited abilities - Stanford started Jeff on a mitochondrial cocktail, LDN (low dose naltrexone) and valcyclovir, an antiviral 0:53:00 Jeff was only on LDN for 2 months because he was feeling sicker - it was another 3 months be bedbound because of it 0:54:00 Jeff was on the valcyclovir for 9 months, but it took away from his health, not helped - Stanford said that the chances of improving decrease the longer someone has been ill - it cost a lot for Jeff to get treatment: flights and hotels, $1200 for the appointment, another $5000 for the testing - Jeff had to cash in some of his RSPs to pay for it 0:55:00 What the Toront Enironmental Health Clinic was helpful with, was diagnosing POTS - post orthostatic tachycardia syndrome - with a tilt table test 0:56:00 For Jeff, his heart rate goes up over 30 beats a minute when he goes from laying to standing, this is why he's dizzy when he vertical - but there no real treatment for that either 0:57:00 POTS falls under cardiology, and the big thing for POTS in cardiology is exercise, but exercise makes people with ME much sicker - the cardiologist Jeff saw was part of a national board, but they excluded people with POTS and ME, because people with ME can't exercise 0:58:00 So medically marginalized again - Scott says that people who are fairly healthy wouldn't really notice a 5% improvement in their health, but if someone is sick with ME and only has 5 or 10% functioning or quality of life, a 5% improvement is huge 0:59:00 Jeff has maybe one hour a month when he doesn't feel really sick 1:00:00 Jeff feels like his body is stuck in the 'sick' position - and that relates to researcher Robert Phair's theory that people with ME's bodies are stuck in a metabolic trap, a sickness trap 1:01:00 Jeff describes his energy as 12 cents of gas a day - going to the bathroom uses 6 cents - PEM, or post exertional malaise, is the biggest issue with ME 1:02:00 For people with ME, exercise, even walking to the end of the driveway, or lifting groceries, is never going to be good, it puts energy into a deficit, and that causes PEM, an exacerbation of ME symptoms - cognitve and emotional 'effort' can also cause PEM 1:03:00 Jeff has resigned himself that he will never get better - but he thinks understanding of ME will come, and his purpose is to push that forward so that others don't have to lose decades of their lives - Jeff hopes he doesn't get so sick that he needs to be tube fed 1:04:00 Jeff's fascinated about the responses on Facebook when he posts about ME - he's educating a lot of people - having someone at the Canadian Institute for Health Research understand ME can change the world 1:05:00 Jeff has been sitting up for an hour, so the usual crushing fatigue is worse, the room is spinning - this is a lot of effort for Jeff, the equivalent of a 50 mile jog for someone healthy 1:06:00 Scott says he used to think people who did triathlons were so tough, but they have nothing on the people who live with ME - Jeff says the sickest people with ME are the toughest people you'll ever / never meet - and they are trying to help others, even when they are so sick they can't speak - Scott says he's healthier than other people with ME, maybe because of HIV meds 1:07:00 Jeff says that others with ME, who don't have HIV, can't get access to the meds because their doctors will lose their license Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  

A quick recap - in part 1 of the interview, Larry was having chest pain and his wife Jane drove him to the hospital, where he was diagnosed with a heart attack and sent by air ambulance to another hospital, a Catholic hospital, where they were met with hostility and a chaplain determined to keep Jane and her son from seeing Larry. At the end of part 1, Jane was blocking the Cathlolic hospital’s chaplain from coming into a meeting with the doctor about Larry’s medical care and condition, and things are about to get even stranger….and more frightening... SHOW NOTES: 0:04:00 They got to the doctor's office, and again Jane asks the chaplain to go away - she put her arm across the door and said I don't want you in here, you have to leave now - but he came in sat down - then a doctor came in and 1st thing he says is 'I don't want to be here, I am tired, I want to be at home, I don't want to be here' - the doctor says 'I'm supposed to show you this video, but I can't get it to work - I'm tired and want to go home - do you really need to see it - do you have any questions?' - Jane says 'no', and the doctor leaves 0:05:00 Jane sees 2 women wheeling Larry - but the women looked mean and disgusted, and Jane stepped back - the chaplain said he'd escort Jane and her son back to the waiting room 0:06:00 the chaplain said Larry would be free for visitors in about 15 minutes, and that the chaplain would be right back - 2 hours went by and no word from any one - Jane was shocked by the whole situation 0:07:00 Jane was told that she would have to go because visiting hours were over - she found out later their policy is one person can stay overnight 0:08:00 Larry was left naked from the waist down until the next nurse came on shift - Larry woke periodically to feel a touch on his genitals, or the sound of laughter 0:09:00 When the next nurse, a male nurse, came on shift, Larry was covered after that - according to records, about 6am with the female nurse reported that Larry woke up nauseasted and vomited on himself 0:10:00 the female nurse cleaned him up, but left him naked to go get supplies - the records show they knew the meds they gave him would make him vomit, so they prescribed an anti-nausea med, but the nurse never gave it to Larry - so he could've choked to death on his vomit 0:11:00 On Sunday Larry was still kind of out of it - the doctor had come in the morning to tell Larry about the procedure 0:12:00 Larry thought he must have been in bad shape if they had to do that procedure - when Larry and Jane talked, they realized neither of them gave permission for the procedure - Larry wanted to get out of the hospital as fast as possible 0:13:00 When Larry got home he had a shower, but he didn't want to talk to Jane about the experience - he was traumatized - he's had nightmares ever since - he can't believe what they did (cries) - it is beyond unprofessional, they intended to harm Larry 0:14:00 It wasn't until they got the hospital records that they started to piece together why Larry was treated the way he was - the first hospital did not record the pain killer they gave him, or the reactions Larry told them he had to pain meds - they also wrote down that Larry had a husband 0:15:00 So hospital #1 recorded Larry as a gay married man, and they sent him to a religious hospital that has anti-gay policy - the hospital is in a lawsuit because they refuse to perform certain services to LGBTQ people - Larry and Jane think hospital #1 was punishing Larry because he didn't want to go to their affiliate teaching hospital 0:16:00 Jane's confrontation with the nurse, was because the nurse was expecting a gay man - Larry and Jane also suspect the hospital thought their son was Larry's husband, always addressing their son, not Jane 0:17:00 At cardiac rehab, Larry told them about his abnormal responses to pain meds - cardiac rehab noted it, then crossed it out - CMS (Centre for Medical Services) told Jane doctors can do any procedure or give any drug they want, even if you have declined it 0:18:00 The ER doctor lied to them - he knew what he was doing - the 2nd hospital didn't note any of the meds Larry had already been given - they wanted to make it look like Larry had agreed to the other pain meds in their records 0:19:00 They had the chaplain gaurd Jane and her son, because the hospital had called in the cath lab team special, they were going to give Larry the prodecure, it didn't matter if he didn't want it - because the nurse thought Larry was gay, she was gaining points with hospital staff who witnessed her torture Larry - she's a predator and should not be working with any one 0:20:00 Larry doesn not have modesty with health care issues, this is a nurse who used her power and authority while Larry was drugged and wasn't able to physically or verbally stop her - Versad is a date rape drug and erases the memory - that's why the hospital thought Larry wouldn't remember anything 0:21:00 In Europe, they don't use drugs 75% of the time for this procedure, but the US to make the patients submissive and without memory - so #1 the air ambulance staff gave Larry meds without his permission, and #2 the lead doctor did not ensure a true consent was attained from Larry for the procedure 0:22:00 Now Larry has to live with the consequences of the procedure for the rest of his life - Larry now has to take medications to prevent the implancted stents from killing him, and they cause other complications: liver failure, diabetes, etc - Larry was also exposed to more radiation than protocol - Larry is a cancer survivor, so he would never have consented to that much radiation exposure 0:23:00 Jane can't believe it happened, and nobody can tell them why 0:24:00 So homophobia intersects with profiteering while denying informed consent, lying about informed consent, coupled with mulitple medical errors - in Larry's medical records it says 'his pregnancy was uneventful, and the baby is doing fine' - another section says Larry had a 6 hour procedure - another section of his records says the nurse reported she was at the 1st hospital when the put the IVs in, and had informed Jane about everything 0:25:00 Lie after lie after lie, mistake after mistake - that's the bad thing about electronic health records, the staff just go through and check boxes 0:26:00 All they do is 'click click click' - but Larry's records are so bad, they are practically useless in trying to figure out what they actually did or did not do - they say to avoid stress after a heart attack, but then the hospital loads all this unnecessary stress, like they wanted him to die because they thought he was gay 0:27:00 Jane couldn't imagine being a gay person and going for treatment at a Catholic hospital - Jane says she would crawl away rather than step foot in one of those hospitals because they use their religion to cause harm - in their hiring practices, the hospital says they have the right to supercede state and federal laws 0:28:00 Larry and Jane have not gone for trauma counselling because they don't trust them, but they recognize they both have PTSD - Jane feels guilty for not protecting Larry 0:29:00 Jane's guilt is motivating for her advocacy - but they can't get an attorney to take their case because there is no 'evidence' in the medical records of harm to Larry 0:30:00 Each hospital shold abide by the federal patient bill of rights, these were all broken in Larry's case - there could be a class action lawsuit - but attorney's won't deal with this hospital, because it is particularly vicious and aggressive 0:31:00 When Jane complained, the hospital wrote back 'if you don't like it, go somewhere else' - the doctor wrote 'if I've done something I'm sorry' - Jane asks 'what do you mean 'if'?' - you did a procedure without consent 0:32:00 The records said Larry was diabetic, but he's not - for months he got calls from companies trying to sell him diabetic supplies - his health insurer even told him to go for his diabetes check up - but he can't get them to correct his medical records 0:33:00 The doctor did a glucose test, but it was not fasting, it was during Larry's heart attack - any newbie doctor would know a glucose test at that time is useless and misleading 0:34:00 In the US insurance company gets paid for chronically ill patients, so with a diabetes label, they would have made more money - the hospital charged for 2 rooms on 1 day - CMS and the insurer didn't want to deal with the fraud, so for 6 months Jane persisted until the hospital removed the extra billing - the insurance company told Jane she caused bigger problems because they had to re-submit the bill 0:35:00 They didn't care that $3000 was stolen from them - fraud is alive and well in hospitals, they know how much they can get away with, and they do - they gave Larry 1 medication twice, 15 minutes apart, but the 2nd dose cost $25 more - they are not health care centers, they are profit making centers 0:36:00 So at least in the US, there is no such thing as patient rights - Jane has a book called "Operating Room Confidential" by Dr Paul Whang, an anaethesiologist - he writes they like to have fun with male patients - the medication they give causes penises to move and become erect - they like to bring in new nurses and say 'look what you do to him' 0:37:00 They use patients for sexual entertainment - they have no respect for patient dignity - once you've been drugged, you have no control over what they do to you 0:38:00 Larry will never go to the ER again - he had a medical encounter recently for an EKG, the medical assistant said 'strip from the waist up' - 'strip' is a word that should never be used in a medical setting, it is a sexual word - Larry froze (a PTSD symptom) and the medical assistant started to take off his shirt, but Jane yelled and stopped her 0:39:00 Jane asked the worker if Larry's record had note that he's the victim of medical sexual abuse, the medical assistant said 'no' -- so again, if the hospital doesn't want something in the patients record, it won't put it in - Jane told the worker the note was also supposed to say that Larry should receive trauma informed care - the medical assistant knew nothing of the concept 0:40:00 How men are treated in health care is very different from women - for example, when a man goes for a prostate exam, he'll be told to drop your pants and bend over the table, even if there is a female medical assistant - but how many women for a gynecological exam are told to 'drop your pants' 0:41:00 Health care is so different for men and women, and Jane is determined to change it and has become an activist 0:42:00 Jane thinks nobody should have to undergo a procedure without their consent, it is criminal, and somebody should go to jail for it, somebody should lose their license 0:43:00 If versad was given to a woman at a party, and she was undressed, and a bunch of people called in to look at and touch her, they would be arrested - but why do hospitals get away with it? 0:44:00 The consent form at the hospital says the doctor has the right to do anything the doctor feels you need - even if you've had a verbal conversation about your wishes - as soon as you sign that form, it negates your conversation 0:45:00 If Larry had of been asked to sign the consent form, he would have - as he has always done - cross out 'students, sales reps, observors' to be allowed in during a procedure - CMS said the procedure had already started before the form was completed by the medical staff 0:46:00 Larry is doing okay - not getting as much work done as before - has shortness of breath, could be side effects of meds of the stents - tired, hard to focus, that never happened before - a PTSD symptom 0:47:00 Larry gets very quiet, while Jane gets very mad - we all have different ways of dealing with trauma - Larry has nightmares - Saturday nights are hell for them, they can't see a clock 0:48:00 The medical trauma and PTSD prevents Larry and Jane from seeking trauma treatment, but cause they can't trust people in the health care field - they are considering moving to another country 0:49:00 With the COVID pandemic, all doctors are heroes - but Larry's doctor's were not heroes - how do you tell which ones are heroes? 0:50:00 There are a lot more people out there with similar experiences that we never hear about, they just accept that that is the way it is - they never examine their medical records or they would see - yet those records are the gospel to CMS or the State Attorney General or whomever should be enforcing and taking care of patients rights 0:51:00 In Indiana, the only way they can do a procedure without consent, is if the patient is unconscious and the next of kin cannot be found - but Larry was conscious and Jane was at the hospital 0:52:00 We cannot let them continue to do this, we must stand up - its our rights, its our bodies - doctors are our paid advisors, to carry out our wishes, like a server at a fast food restaurant - doctors need to learn that Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

When Larry was doubled over with chest pain, his wife Jane drove him to the nearest ER where he was diagnosed with a heart attack.  The health care Larry received over the next few hours was motivated by profit and punishment. At each turn, hospitals sought to maximize their profits, including fraud and falsified medical records, on the treatment Larry received. The hospital staff made choices, always the most expensive choice - like sending Larry to another hospital by air ambulance instead of road ambulance, or choosing high cost, highly invasive medical procedures over the least costly, least invasive medication Larry actually requested. In spite of Larry repeatedly stating he only wanted a minimum dose of pain killers, the hospital injected him with multiple pain killers, rendering him incapable of making informed consent. Larry was air transported to the local Cathlolic hospital. While much of this was going on, Jane and their son were intentionally and overtly being kept away from Larry by the hospital chaplain -- and while the chaplain was receiving updates on Larry’s condition, he wasn’t sharing the info with Jane and their son. Hours went by and during that time, Jane repeatedly asked the chaplain to leave so she and her son could have some privacy and speak freely. He refused each time. Jane couldn’t understand why the staff were being so openly hostile toward her and her son. The next day, Larry couldn’t understand why the staff had ignored his statement to be treated with medication, and instead implanted several costly devices in his body. Devices that cause side effects and will probably contribute to his death. But when Larry and Jane got a hold of Larry’s medical records, they began to understand that his hospital care and treatment was not based on his medical need, it was based on profit and religious punishment. But the punishment was actually started by the first hospital as Larry and Jane share in the medical experience with multiple layers: profiteering, medical errors, negligence, religious bigotry, fraud, homophobia, deceit and denial.  If you thought hospitals were benevolent and their staff empathetic, you will think differently when you hear all that happened to Larry and Jane in part 1 of my interview…. SHOW NOTES: 0:06:00 Larry (a pseudonym, as is Jane's name) grew up in Indiana - his father was a contractor in the construction industry with one brother, and a half brother and sister - health child with normal measles, mumps, poison ivy 0:07:00 Jane grew up in central Indiana - her father worked for the a big pharmaceutical company - when her parents got divorced, life was hell because they fought constantly even though they were divorced - Jane met Larry through work, she worked for the State and Larry was doing a contract computer job 0:08:00 They've been married since 1987 - they have a son who is a teacher, and a daughter who is in business with Jane, doing specialty sewing -- On August 11, 2018, a Saturday night about 7pm 0:09:00 Jane found Larry on the floor with chest pains and difficulty breathing - pain level about 7 out of 10 -- Jeane said they had to go to the hospital, but Larry wasn't keen 0:10:00 Larry has always been healthy, so not in the habit of seeking medical attention - Larry thought maybe it was indigestion from dinner 0:11:00 Larry wasn't having pain down his arm or irregular heart beat, his blood pressure was fine 0:12:00 The pain was for about 8 - 10 minutes before Jane found him 0:13:00 They live in the country so drove the local hospital - when Larry got to the ER his pain was 6 / 10 0:14:00 They admitted him right away - first thing Larry did was tell them he was very sensitive to pain killers and didn't want any fentynal, versad or anything like that - the doctor if he would accept a small amount of morphine, so Larry agreed to that - but he told the doctor that in the past pain meds had messed with his blood pressure 0:15:00 Pain meds raise his blood pressure, cause erratic breathing, cause nausea - after the morphine, Larry's pain was 1 / 10, a dull ache 0:16:00 They did diagnosis a heart attack, but said they were not equipped and that Larry would have to go to another hospital - Larry decided to go to the hospital that had a heart center 0:17:00 Larry was told he would have 3 options for treatment: open heart surgery -- or angioplasty - or medicines to bust the clots -- Larry said he'd prefer to try the drugs first - the doctor said Larry could discuss with the doctors at the heart hospital - Larry said that Jane needed to be there for major decisions 0:18:00 The morphine made Larry a little slow on thinking - he would find out later they had given him 4mg - the doctor said he would order transportation to the other hospital, he'd call both an ambulance and helicopter and whoever arrived first would take Larry - but according to the hospital records, they never called an ambulanc, even though the EMTs were just down the street 0:19:00 Jane checked with the EMTs later, and they were available and could have taken Larry - but Larry believes the hospital chose the air ambulance because it belongs to the hospital and is more expensive 0:20:00 It took almost an hour before the air ambulance arrived with pilot and 2 medical workers - they asked Larry is pain level, he said 'one' - he found out later they wrote down 'eight' 0:21:00 But the ER doc had noted Larry's pain as 'one' after the morphine 0:22:00 They loaded Larry into the helicopter - Jane and their son started to drive to the other hospital - in the helicopter, Larry wore sound defeaning ear protectors - the paramedics did not speak to him, but noted in their records his pain was 8 / 10 0:23:00 In their records it shows they gave Larry, without his knowledge or consent, a 100 mcg of fentanyl - Larry was out of it, he didn't know what was happening - he thought he must be dying, he felt like he was above his body - this continued until late Sunday - he was incoherent and can only remeber bits and pieces - but basically like a zombie 0:24:00 Larry does remember when the helicopter landed, there was no one to meet them - the paramedics waved down an employee in the parking lot, who let them in a side door - they wandered around the hospital looking for the 'cath lab' 0:25:00 When they got to the cath lab, with the pilot observing, they put Larry on a steel table - they had already given him to IV ports, one in each arm - the female nurses in the room didn't speak to Larry, but started stripping his clothes off 0:26:00 Larry would find out later they dumped his clothes in a red haz (hazardous material) mat bag - Larry was out of it, his arms felt like lead - fentynal also paralyzes and makes patients compliant 0:27:00 Larry could hear the doctors and nurses talking - someone said to send a Chaplain to the family and Larry wondered if he was dead - he was scared, wanted Jane 0:28:00 According to the records, Larry was left naked on the table for about 25 minutes, they never spoke to him - but their records said his pain was 5 / 10, but Larry wasn't feeling any pain - Larry heard one of them say they would have to shave Larry, so he thought he must still be alive, but why would they want to shave him? 0:29:00 They put 2 more IV ports in his arms, so that he had 2 in each arm, but there was nothing in the record - he could hear them talking and laughing 0:30:00 Larry found in his record a consent form that stated that Larry had verbally stated that he was having an 'emergent cath', but he did not even know that term at that time - but Larry did not say that, and their records showed him 'alert X3' - but they had given him 4mg of morphine and 150mcg of fentanyl and 1mg of versad 0:31:00 CMS (Centre for Medicare / Medicaid Services - government watch dog) admitted the consent form had only been completed after Larry had been drugged - but CMS also said no reasonable person would say no to gold standard treatment 0:32:00 In the medical records, one doctor said he thought they should just put Larry in a room for observation, but the hospital had already called in the cath team (cath team: xray above steel table, from groin to chin) 0:33:00 They go in through the wrist if they are experienced, otherwise in through the groin, as happend to Larry - they insert flexible wire with camera on the end after shooting dye into your system, known as angiogram - and angioplasty is when they go in and bust blood clots, or open an artery with a balloon, aka PCI except put in metal stent 0:34:00 stents have a habit of forming plaque and platelts and blockage and probably heart attack 0:35:00 Larry was cold, didn't know what was going on, pressure from xray machine, and also immense pressure in his groin as they pushed the tools up through his arteries - when all is said and done, they put 2 stents in Larry that will probably kill him at some point in time - another artery was 38% blocked, but they didn't do anything with it, they will save it til later - for another costly operation 0:36:00 so Larry is naked on the cath table, so cold he's shaking - the records show that Larry's blood pressure dropped severely at that time, Larry went into cardiagenic shock, which is low blood pressure for more than 30 minutes 0:37:00 Larry and Jane don't think it was cardiogenic shock, they think it had to do with the massive amount of fentanyl - they were also doing a procedure to clear out the clots at that time, so it could have contributed - the doctor who did the procedure was new, just learning 0:38:00 The nurse told Larry that they were going to put suture's into Larry and that it would hurt - they sutured 3 different places, because they also implanted a pump to help his heart, they sutured to the inside of his leg - as well as sutured a pacemaker into the inside of his other leg 0:39:00 They didn't use a numbing agent for the sutures - Jane says it seemed like they enjoyed inflicting that pain - this would become apparent later when they got the medical records 0:40:00 After suturing they moved Larry onto a gurney with a sheet over him and took him into the hall where he caught a glimpse of Jane and their son - they moved Larry to the CCU - coronary care unit 0:41:00 They moved Larry onto a bed but the nurse was flustered because the gown Larry was in was not the right gown for CCU, so she ran off leaving Larry naked again - she found a gown and put it on Larry, but only from his navel up to his chin - she was trying to hook up the equipment 0:42:00 She was complaining about too many wires, not enough connections, she didn't know how to do it - then the room fills up with IT techs and more nurses - the nurse told Larry to urinate and if he couldn't, she would put a catheter up his penis - so Larry peed into a bottle in front of a room of people as look on and talked and laughed - then the nurse showed the people how she was cleaning up Larry like a baby, and they laughed 0:43:00 It is hard to reconcile the juxtaposition of Larry perhaps dying from a heart attack, and the laughter of the hospital staff in the same room and context 0:44:00 A woman asked Larry if his spouse sexually molested him - but Larry felt like he'd just been sexually molested and felt humiliated and wanted Jane - he could finally hear her voice and she was having a tense conversation with the nurse about who his spouse was - the nurse then pulled the sheet up to cover Larry' genitals 0:45:00 The staff put Jane and her son in a waiting room, and told it would be 15 minutes - 2 hours went by - but there was hardly anyone in the hospital, but their son grabbed a nurse 0:46:00 She started laughing at him 'I know who you're here to see' - she told them how to get to Larry's room, but was laughing the whole time - Jane went towards Larry's room, while their son went to fetch his diabetic medicine from the waiting room 0:47:00 As Jane gets to Larry's room, she can see the sheet is only covering Larry from his navel up - the nurse turned smiling, but when she saw Jane she told Jane to get out - Jane said 'why, I'm his wife' - 'no you're not' - Jane said "I am' 0:48:00 The nurse starts laughing again and adjusting the sheet on Larry, saying 'there was a room full of people, I didn't know how to hook up the equipment', laughing the whole time 0:49:00 When Jane and her son arrived at the hospital, they were told that Larry was not there and were told to stand aside - the staff whispered among themselves and then yelled across the room that he was in the cath lab and they would send a chaplain - a nasty looking man in a polyester suit said he'd take Jane and her son to the waiting room 0:50:00 Jane tells the chaplain that they were fine and he could go - he said no, he'd stay - Jane repeated that she preferred that he left, but he refused - Jane and her son wanted to talk privately, but he wouldn't leave 0:51:00 The chaplain's phone rang, it had it on speaker phone - Jane could hear the person on the other end refer to Larry - but the chaplain walked away so Jane couldn't hear any more - he then said they were working on Larry - this happened 3 times - the 3rd time the chaplain said the doctor was ready to speak to Jane and her son - They got to the doctor's office, and again Jane asks the chaplain to go away - she put her arm across the door and said I don't want you in here, you have to leave now Part 2 of the interview with Larry and Jane next week. Connect with Larry and Jane on Twitter  Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

At the end of part 1 of my interview with the iconic Howard Bloom, he’d just told us about getting the flu, but instead of getting better in a few days, he got much sicker.  Nobody who gets the flu thinks that they will not recover -- we all assume we’ll feel crappy for a few days and then get back to work -- just like how we initially thought survivors of the COVID virus would get back to their pre-COVID health, but now we’re hearing reports of ongoing fatigue and neurological symptoms in a significant number of people who have had COVID. Research of the SARS pandemic and other viral infections, tells us that not everyone will recover -- some people will develop myalgic encephalomyelitis (aks chronic fatigue syndrome), or ME/cfs, like Howard did. As the COVID pandemic settles into our nations and neighbourhoods and we wait for treatments or a vaccine, we have to wonder how many people with COVID will remain very sick and disabled by ME/cfs? And will you be one of them? Now here’s part 2 of my interview with Howard Bloom, the author of the newly released ‘Einstein, Michael Jackson and me’, as Howard shares how he coped with being mostly bed bound for 15 years, and what protocol he uses to keep himself pursuing truth in science. SHOW NOTES:   0:05:00 Howard can't even remember being at work on Monday - about noon on Tuesday he told his colleagues they had to get him out of the office immediately because soon he'd be too weak to walk upstairs - his staff literally dragged him to the car to take him home - he doesn't know how he made it upstairs to his 4th floor apartment because he was so weak - Howard was too sick to leave his bedroom for 3 months - often too weak to think and too weak to speak 0:06:00 And the Howard got better, he thought it must have been a really bad flu - Howard did not see a doctor during this time, he was too weak, and doctors stopped making house calls - when Howard got better he went to see a fancy doctor who gave him a fancy diagnosis of Duchenne Syndrome (muscular dystrophy), but he was wrong - Howard got back to walking every day 0:07:00 One day Howard had John Mellencamp playing at Madison Square Gardens, The Scorpions playing at The Meadowlands and opening for Metallica, and Cyndi Lauper was graduating from high school, she had dropped out, but she was getting an Honorary Diploma - so Howard had a very busy day 0:08:00 "That day broke me" - he had strange, unbelievable symptoms - if it was 90 degrees out, he'd be freezing, shivering, teeth chattering - a breeze from an open window would hit Howard hard, so he had to forbid people from opening windows, even on 90 degree days - on 40 degree days, he'd be overheating and sweating - his thermoregulatory system was broken - he had no idea what the fuck was happening to him 0:09:00 At some point Howard went to his family doctor, who could not diagnose him - Howard told his staff he didn't know what was wrong with him, he could be dying, but he couldn't work any more and gave them the business - the next day he was offered $350,000 for the business, but he declined 0:10:00 Howard finished 2 weeks of work, went to his bedroom and didn't come out for 15 years for all intents and purposes - Howard did some research and told his doctor he thought he had chronic fatigue syndrome (CFS) - the doctor said there is no such thing as CFS - but 3 years later to doctor thanked Howard for educating him on CFS, because he'd been seeing it in a lot of his patients 0:11:00 Howard says that when you have an illness with no name, you are not on the map of humanity - so it is scary to have CFS and because it is scary to others, they don't even acknowledge it - if you lose the ability to walk, Howard lost the ability to speak for 5 years, not a single syllable - he also couldn't have another person in the room with him - when things like that happen, you lose connection to humanity 0:12:00 You are stripped of a sense of being human, and before that you were not even aware of that sense, but you know it when its gone - Howard said it is more unsettling than he can describe - it took Howard 3 years to re-build an identity, in the only place he could 'walk' around: cyber space 0:13:00 The 1st 3 years of being sick and bed bound, Howard tried to work at home but kept relapsing and having to start at zero again and try to build up his ability - but he was getting worse, and his 'recovery' less so each time - then he realized he was spending a lot of energy sitting up 0:14:00 By saving energy by not sitting up, Howard eventually got his voice back - Howard had his assistant set up 2 computers by his bed and jerry-rigged some foam to support the keyboard so Howard could see and use it as he lay horizontal 0:15:00 This allowed Howard to connect with the outside world - this was 1991, so no world wide web, no search engines, no Amazon 0:16:00 Through a friend, Howard took a non-paying job with Art College in Pasadena and they had created a virtual world that Howard could get into and 'walk around' using his cursor and mouse pad - he also discovered online romance - most days he could type, but not always could he lift his fingers 0:17:00 Howard became a Lothario online - he realized we get bodies we did not choose - but online we are untethered from our bodies, Howard thought that was astonishing - during those 15 years he founded 2 international science groups and wrote 3 books - but he was in solitary confinement and that produces pain of a kind no one else has experienced 0:18:00 They are a nightmare, torture, hideous because we are built for social contact 0:19:00 Howard's life was built on books, his obligation to society was books - 'books were me' - so Howard only had 2 things: his books and his marriage - then in 1994 his wife decided to divorce him - she had been leaving town to look after her mother with Alzheimer's, but leaving Howard alone for up to 3 days - it was more horrible than Howard can convey in words 0:20:00 Howard begged her not leave him alone for long periods, but she started leaving him alone longer - soon she left Howard and he found 2 people who would live in his former step daughter's bedroom and they would feed and cloth him 0:21:00 One day his wife, Linda, came to visit him, unannounced - Linda brought a lawyer with her who served Howard with divorce papers - stressful situations drove Howard's body into relapse - but Howard read the papers anyway 0:22:00 It said if you don't answer in 20 days you lose everything including the bedsheets you're lying on - his wife had brought him a Teddy bear and said she wanted to be friends - he's never spoken to her since, that was their Pearl Harbor - Howard managed to find a lawyer even though he could barely talk 0:23:00 Howard's lawyer asked for a disability exemption to attend court, but it was denied - he was too sick to travel many hours to the court from New York city to northern New York state and it would take him 3 months to recover - the judge didn't give a shit - because CFS didn't exist, it meant Howard wasn't ill 0:24:00 This caused Howard immense emotional pain, he wanted to disappear - so one night he took 120 valiums and 15 thorazine and lidocaine 0:25:00 Howard injected all 5g of the lidocaine - but he only did intramuscular and not intravenous - for 3 days he laid in bed like a corpse 0:26:00 The only muscle that moved for 3 days was his diaphragm - if blood stops circulating you're in trouble - Howard woke up 3 days later 0:27:00 He found blood had come out his chest and neck - if he wasn't a Jewish Atheist, he could've applied for Sainthood in the Catholic church - and he's lost the use of 3 limbs because of ischemia, lack of circulation - he could only use his right hand - his doctor made a house call - he said he wanted to send Howard for 7 tests - Howard said 'fuck that, I can't even get up and down my stairs' 0:28:00 He told the doctor to give him 4 days to get the use of his limbs back - Howard learned how to stand and balance - by jerking his hips forward he could do a semblance of walking - he started by walking to his living room and back, and increased the frequency by 1 each day until he got to 9 miles on the pedometer 0:29:00 His theory was that if he worked his legs everyday to overcome the eschemia, he'd get the blood flow back to his limbs, and he did get their use back - Howard was put in touch with a journalist who had been raised by evangelical parents who were trying to put rock n roll out of business 0:30:00 Howard said he could be interviewed on Christmas day, because Howard would feel especially lonely on that day - he was working for Disinformation.com, and it was headed by Richard Metzger - Howard looked him up and saw he interviewed extreme people 0:31:00 Howard called him up and said 'do you want to walk with a walking corpse? - Come to my apartment at 1pm tonight' - Richard came and talked and took notes until 6am and wrote "I have met God, Bloom is the Einstein, Newton and Darwin of the 21st century' 0:32:00 When Howard got sick, there was no info about CFS - there was an article by Hillary Johnson that had appeared in Rolling Stone about Epstein Barr virus - he thought it sounded horrible, but that he wouldn't get it....but he got it. 0:33:00 Then they found it wasn't causing CFS - Howard says that to the best of his knowledge, they still don't know what causes CFS - for Howard, any stressors would cause a relapse, so he avoided stress as much as possible - of course the divorce was a major stressor 0:34:00 So he would watch Golden Girls and read humour books - but sometimes the 'crisis' in the Golden Girls would set off Howard's stress response and it would take him 3 months to recover from an episode of Golden Girls - he tried to read the blandest writing, like James Thurber 0:35:00 Howard loves Thurber's books - one was about dogs, he loved it...until he got to page 98 when he described a dog fight, and that flattened Howard for 4 months - its hard for people who've never had the experience to conceptualize how conflict on a tv show can cause months of physical disability - but Howard has a theory based on what drugs helped him 0:36:00 We have a stress handling system and like many things in the body it works on a Cheritonian System, a balance between and excitor and an inhibitor 0:37:00 Next time a loud noise happens, check your cognitive system: it is alarmed trying to figure out what it is - our bodies have glutamate, a chemical stimulant - we also have an inhibitor called gaba - Howard started taking valium 0:38:00 He says you have a 20 minute window after a stress response to do something about it or you are fucked - but if you take valium you can avoid a relapse - but if you miss that 20 minute window, you'll be sick for months, too weak to do anything - eventually he convinced his doctor to give him oxytocin, which helped 0:39:00 Then Howard started on gabapentin - valium, oxytocin and gabapentin all feed into the gaba system, the inhibitor - so Howard's system was in hyperdrive all the time, there was no inhibitor - sometimes Howard had to take 27 valium at a time 0:40:00 At that same time the Journal of American Medical Association came out with a cover story saying sometimes an overdose of a drug could be what they need to come back to normal - Howard now takes 30 different drugs and supplements twice a day, it takes about 30 minutes - some he injects intramuscularly, like magnesium, 1 cc of oxytocin, and 2 cc of B12 methylcobalamin - has been on the regime since about 1998 0:41:00 And slowly, slowly, slowly these drugs helped him recover from CFS - by 2003 he was able to get out of the house - during the previous 15 years he had repeatedly worked his way up, adding one step at a time, until he could climb the 4 stories in his house, and then he started adding 20 feet at time on his sidewalk, but then he's have a relapse - that happened maybe 3 times during those 15 years 0:42:00 But once he got the drugs he was able to work up to 6 miles a day - Howard doesn't know of anyone else taking his regime - one day when Howard was at his 'CFS' doctor, the doctor showed him off to other patients as an example of what the doctor could do - but he was misleading them, because what he suggested was not what Howard takes - in fact, Howard found the things the doctor used to be useless 0:43:00 Howard took a very scientific approach to finding what worked - monitoring what worked, what didn't - one day a good friend contacted Howard and said the Duchess of Kent has what you have, can you write her a letter about how to cope with it - so Howard wrote a pamphlet, 16 pages - and had it updated in 2003 - realizing with CFS you have a very limited amount of energy and if you exceed it you're in big trouble 0:44:00 Howard's wife convinced Dr Derek Enlander to come see Howard - there was Dr Susan Levine too, but she required CFS patients to come into her office - 'fuck that, does she not know anything about CFS patients' 0:45:00 The most important thing Dr Enlander did was hand Howard a piece of paper with an email address of a patient in Texas - Howard contacted her and they searched online for treatment modalities 0:46:00 She would track down the doctor using the protocol and get that info back to his doctor - the doctor would sit on it for 6 months, then burp it back up as his own idea and then prescribe it 0:47:00 By experimenting, eventually Howard figured out what worked and that's why he was able to get out of bed in 2003 and resume a normal life - each day he does 1220 pseudo push ups each day, they are closer to planking 0:48:00 Howard also walks 5 miles a day, that is huge for 76 years old - and he's stronger in many ways than when he was 19 - he feels stronger and better then ever in his life, and is free of the clinical depression 0:49:00 Howard thinks it may be the gabapentin as it has shown antidepressant qualities - with CFS you have to be aware of your energy boundaries and do not cross them or you are fucked 0:50:00 Howard took a chance and was the key note speaker at a conference - Howard has a theoretical physics colleague in Moscow, and the 2 of them had been invited to address an audience of quantum phsycicists in Moscow - quantum physics is Howard, it would be like a home coming, there was no way he was going to miss it 0:51:00 Howard flew to Germany to catch another plane to Moscow - half way through the flight he started to experience CFS symptoms, by the time the plane landed, he was in bad shape - he could only lie down in the infirmary if he gave up his passport, very scary 0:52:00 Howard was so sick and desperate, he gave them his passport - then Howard realized he forgot to take his afternoon medicines - to took his gabapentin and 15 minutes later all his symptoms disappeared 0:53:00 That was in 2005 and the last time Howard had a relapse, he learned his lesson - he carries gabapentin with always - Howard says it is possible to overcome CFS, he started taking them in 1998, and it took 5 years for the drugs to accumulatively work 0:54:00 Howard tried to tell the medical establishment about his recovery and regime - but Howard says the last thing in the world he wants to write about is CFS, he's out of those woods, out of that nightmare, he doesn't want to go back 0:55:00 Although Howard been published in 12 different fields, he has no desire to research CFS - his goal is to cover many disciplines and to see the big picture, that's his task in life, that's his job 0:56:00 Howard says Dr Enlander was one of the doctors who popularized the term myaglic encephalomyelitis (ME) - Scott says his energy is flagging due to ME and explains how there is no equivalency between ME and HIV (if you get HIV meds) 0:57:00 JB (he connected Howard and Scott) wanted to know about your sleep regime - Howard says sleep was very important, one of the things that got him healthy - he had insomnia since he was 13 years old, but it got worse with the CFS - then he did a perceptual flip: instead of trying to make his body his sleep for 8 hours according to societal construct - Howard decided to 'listen to my fucking body' - he now sleeps in 2 four hour sleeps 0:58:00 He sleeps as soon as his head hits the pillow, so it turns out listening to his body is good - and if it wants 2 doses of 4 hours, so be it, and fuck the norm - he sets an alarm to wake him up 0:59:00 Howard has also adjusted his sleep pattern to communicate easier with his girlfriend in South Africa - Howard is 75 years old but he is not old, 'fuck that' 1:00:00 Founder of The Cars rock band, Ric Ocasek died about 6 months ago at the age of 75 - Howard realized that if he had of died at 75 he's never known the amazing, astonishing, ecstasy that he experiences with his girlfriend, the first time in his life - this experience is the closest to the divine he's ever experienced in his life 1:01:00 She's 50 years old, but Howard's previous girlfriend was 21 when they got together - so his current girlfriend is more age appropriate - Howard says, but never let age get you 1:02:00 Howard's new book: "Einstein, Michael Jackson and me" - its about a spiritual journey and is funny and filled with adventures and his spiritual journey in the rock and roll industry Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.