Podcasts about myalgic encephalomyelitis

Join Kirkus-praised poet Autumn Williams as she shares her inspiring journey of transforming chronic illness into powerful poetry. Discover how creative expression can turn personal challenges into universal stories of hope, beauty, and resilience through her bestselling collection "Clouds on the Ground".

fWotD Episode 2761: Myalgic encephalomyelitis/chronic fatigue syndrome Welcome to Featured Wiki of the Day, your daily dose of knowledge from Wikipedia’s finest articles.The featured article for Monday, 25 November 2024 is Myalgic encephalomyelitis/chronic fatigue syndrome.Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. People with ME/CFS experience profound fatigue that does not go away with rest, sleep issues, and problems with memory or concentration. Further common symptoms include dizziness, nausea and pain. The hallmark symptom is a worsening of the illness which starts hours to days after minor physical or mental activity. This "crash" can last from hours or days to several months.The cause of the disease is unknown. ME/CFS often starts after an infection, such as mononucleosis. It can run in families, but no genes that contribute to ME/CFS have been confirmed. ME/CFS is associated with changes in the nervous and immune systems, as well as in energy production. Diagnosis is based on symptoms and a differential diagnosis because no diagnostic test is available (diagnosis by exclusion).The illness can improve or worsen over time, but full recovery is uncommon. No therapies or medications are approved to treat the condition, and management is aimed at relieving symptoms.: 29  Pacing of activities can help avoid worsening symptoms, and counselling may help in coping with the illness. Before the COVID-19 pandemic, ME/CFS affected 2 to 9 out of every 1000 people, depending on the definition. However, many people fit ME/CFS diagnostic criteria after contracting long COVID. ME/CFS occurs more often in women than in men. It most commonly affects adults between ages 40 and 60 but can occur at other ages, including childhood.ME/CFS has a large social and economic impact, and the disease can be socially isolating. About a quarter of those affected are unable to leave their bed or home.: 3  People with ME/CFS often face stigma in healthcare settings, and care is complicated by controversies around the cause and treatments of the illness. Doctors may be unfamiliar with ME/CFS, as it is often not fully covered in medical school. Historically, research funding for ME/CFS has been far below that of diseases with comparable impact.This recording reflects the Wikipedia text as of 00:30 UTC on Monday, 25 November 2024.For the full current version of the article, see Myalgic encephalomyelitis/chronic fatigue syndrome on Wikipedia.This podcast uses content from Wikipedia under the Creative Commons Attribution-ShareAlike License.Visit our archives at wikioftheday.com and subscribe to stay updated on new episodes.Follow us on Mastodon at @wikioftheday@masto.ai.Also check out Curmudgeon's Corner, a current events podcast.Until next time, I'm neural Amy.

The Pillow Writers are an international ME/CFS writing group. They are a very friendly online group that meets to share thoughts and feelings on any topic, including, but not limited to, experience of chronic illness. They encourage a wide range of writing and have several different types of meeting each with a different emphasis. Meetings take place on Sundays, Mondays, Thursdays and Wednesdays. Click here for more details. Steven and Jaime sit down with Pillow Writers, Bobbi Ausubel, Ann Greenberger, and Laila Solaris to discuss the group's first anthology, Near-Life Experiences. This episode also includes readings by the guests, information on how to get involved with the group, their process as writers, and so much more. Pillow Writers Anthology 1: Near-Life Experiences is available now at Amazon in e-book, print, and audiobook formats. All proceeds from the sale of this book go to #MEAction. Free Giveaway!One lucky winner will receive a free paperback copy of the book (limited to US, UK, Germany, France, Japan, Canada, and Italy), and another winner will receive a free copy of the audiobook (limited to US & UK). To enter: Listen to the episode Email podcast@meaction.net by December 15th with "Pillow Writers Giveaway" as the subject heading. Please indicate whether you'd prefer the audiobook, paperback, or either version. Please include your name, and if your preference is for the paperback, please list your home address as well so we can have it delivered to the winner. The deadline for entries is December 15th. The winners will be selected the next day.

Professor Ric Arseneau MD is a clinical professor at the University of British Columbia in Vancouver, Canada, and a specialist in Internal Medicine with expertise in Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/ CFS), Fibromyalgia and Long COVID. Dr Funmi Okunola MD talks to Professor Arseneau MD about ME/CFS, Long COVID and the diagnosis and management of Postural Orthostatic Tachycardia Syndrome (POTS).REFERENCES:1.Definition of Dysautonomia2.Dr Ric Arseneau Homepage3.POTS - NASA Lean Test4 YouTube Video of Physiotherapy Management of Dysautonomia/POTS by Trineta Mohan Bhojwani

Professor Ric Arseneau MD is a clinical professor at the University of British Columbia in Vancouver, Canada, and a specialist in internal medicine with expertise in Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/ CFS), Fibromyalgia and Long COVID. He is interviewed today about ME/CFS by Dr Funmi Okunola MD.REFERENCES1. Walitt B, Singh K, LaMunion SR, Hallett M, Jacobson S, Chen K, Enose-Akahata Y, Apps R, Barb JJ, Bedard P, Brychta RJ. Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. Nature Communications. 2024 Feb 21;15(1):907.2 Project ECHO at the University of New Mexico3 Dr Ric Arseneau Website4. ME TV 5 "Family & Friends" - ME TV Video6 2003 Canadian Consensus Criteria for ME/CFS7 2016 Definition for Fibromyalgia (FM)8 Vahratian A, Lin JM, Bertolli J, Unger ER. Myalgic encephalomyelitis/chronic fatigue syndrome in adults: United States, 2021–2022. US Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics; 2023 Dec 1.9 "Chronic Fatigue Syndrome More Common than Previous Estimates" - Medical News Dec 202310 Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study.Bmj. 2006 Sep 14;333(7568):575.

Linda Elsegood interviewing Andrea, a patient from the United States who has been taking low dose naltrexone (LDN) to manage her health concerns. Andrea has been struggling with various conditions, including postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), long Covid, fibromyalgia, and myalgic encephalomyelitis.Throughout the interview, Andrea delves into the details of her journey with LDN. She explains how her search for relief from long Covid ultimately led her to LDN, and how it has significantly improved her quality of life despite her many health concerns. Andrea expresses her gratitude for how LDN has been instrumental in helping her manage her symptoms and improve her overall health.Linda and Andrea are able to discuss the benefits of LDN in managing a wide range of health issues. Their conversation provides insight into the effectiveness of LDN as a treatment option, and the importance of finding the right approach to managing complex health conditions.

In part two of this two-part series, Dr. Jeff Ratliff talks with Dr. Avindra Nath about new research related to post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. This podcast is sponsored by argenx. Visit www.vyvgarthcp.com for more information.

Dr. Jeff Ratliff and Dr. Avindra Nath discuss clinical pearls and advice to better recognize and diagnose patients with post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. This podcast is sponsored by argenx. Visit www.vyvgarthcp.com for more information. 

Dr. Jeff Ratliff talks with Dr. Avindra Nath about new research related to post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. This podcast is sponsored by argenx. Visit www.vyvgarthcp.com for more information. Disclosures can be found at Neurology.org.

Today, we're excited to bring you the first episode in a special Raise the Line series that Osmosis from Elsevier has created in partnership with the Cohen Center for Recovery from Complex Chronic Illnesses (CoRE) at the Icahn School of Medicine at Mount Sinai Hospital. PAIS: Root Causes, Drivers, and Actionable Solutions is a ten-part examination of a range of post-acute infection syndromes such as long COVID, tick-borne illness, chronic fatigue syndrome, and connective tissue disorders. Your host, Dr. Raven Baxter, a molecular biologist and Director of Science Communication at CoRE, will be joined by an impressive array of specialists in the field to explore causes, symptoms, diagnoses and treatments, as well as the devastating impact on patients who often struggle for many months or even years with a troubling span of symptoms affecting everything from muscle movement to mental health. As you'll learn in the series, diagnostic protocols are lacking for many of these conditions, leading to delayed treatment and prolonged suffering for patients. In this inaugural episode, Dr. Baxter is joined by microbiologist Dr. Amy Proal, CEO of the PolyBio Research Foundation; Yale University Professor of Immunobiology, Dr. Akiko Iwasaki; and Dr. Edward Breitschwerdt, Professor of Medicine and Infectious Diseases at North Carolina State University College of Veterinary Medicine who will discuss the Building Blocks of PAIS.Mentioned in this episode: Mount Sinai Health System Steven & Alexandra Cohen Foundation 

One year ago, we launched Universe Of Art. And to our surprise, a lot of listeners have written in since the start of the podcast, telling us about the science-inspired art they've made in their spare time. And today, we're featuring three of those listeners and their art.Our first artist is Todd Gilens, a visual artist and designer who collaborated with the city of Reno, Nevada, to create a mile-long poem, called “Confluence,” printed on the city's sidewalks bordering the Truckee River. He was interested in how water shapes landscapes, and how urban architecture can mirror those natural processes. He later found the Sierra Nevada Aquatic Research Laboratory, a University of California field station near Mammoth Lakes, and spent several field seasons with them to learn about stream ecology.Then, we'll meet Craig Colorusso, a punk rock guitarist-turned-sound artist who creates public sculptures and experiences that enhance visitors' connection to nature. Two of his projects, Sun Boxes and The Bridges At Coler, use solar panels to play reflective, calming music he composed. “You have this idea where you are in nature and you are listening to something that is powered by nature,” he said. “I think that's perfect.”And then we'll meet a listener who prefers to go by Chris, who was an engineer and avid artist who made mosaics and crocheted before developing Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS). It's a debilitating condition characterized by extreme fatigue that can't be improved by rest, and can also include brain fog, pain, and dizziness. Chris' condition is considered severe, and caused her to lose the use of her hands, and thus her preferred art mediums. However, she could still use her left hand with a rollerball mouse and realized that she could use programs like Chaotica to create fractals that she adds to collages in Photoshop, resulting in the colorful and psychedelic images. “They're just beautiful and I'm doing art again and I'm so happy about it,” she said.Universe of Art is hosted and produced by D. Peterschmidt, who also wrote the music. Our show art was illustrated by Abelle Hayford. Support for Science Friday's science and arts coverage comes from the Alfred P. Sloan Foundation. Do you have science-inspired art you'd like to share with us for a future episode? Send us an email or a voice memo to universe@sciencefriday.com.

Every Saturday morning, the Weekend Breakfast Show focuses on an area of 'wellness' - health, relationships, mental health, career, home - it's all about practicing healthy habits to attain better physical and mental health outcomes. Sara-Jayne Makwala King speaks to Bettie Hough who's living with ME and Chair of ME and Long Covid Unite SA (formerly the ME CFS Foundation) as well as Professor Resia Pretorius, distinguished Professor at the Department of Physiological Sciences Stellenbosch University and an Honorary Professor at the University of Liverpool in the UK.See omnystudio.com/listener for privacy information.

The Ada Hayden Herbarium preserves hundreds of thousands of specimens, including some collected by George Washington Carver. And, as the “Universe of Art” podcast turns one, listeners discuss solar music boxes and what it's like making art with Chronic Fatigue Syndrome.Inside Iowa State's Herbarium With 700,000 Plant SpecimensHerbariums are plant libraries—they contain fragile specimens of plants collected from near and far, and they are meticulously described and cataloged so that someone can reference them in the future. At Iowa State University, the Ada Hayden Herbarium contains more than 700,000 specimens, about half of which are from Iowa.Ira talks with herbarium's director, Dr. Lynn Clark, and curator Deb Lewis about how plants are preserved, why herbariums are so important, and what it takes to manage a plant archive.Science-Inspired Art From Two ‘Universe of Art' ListenersLast week, we kicked off a first-anniversary celebration for Universe of Art, our science-meets-art spinoff podcast. A lot of listeners have written in since the start of the podcast, telling us about the science-inspired art they've made in their spare time.Last week, host D. Peterschmidt spoke with Todd Gilens, a visual designer who worked with the city of Reno, Nevada, to create a mile-long poem on the city's sidewalks about the connections between urbanism and stream ecology.This time, we'll meet two listeners. Craig Colorusso is a punk rock guitarist-turned-sound artist who creates public sculptures and experiences that enhance visitors' connection to nature. Two of his projects, Sun Boxes and The Bridges At Coler, use solar panels to play reflective, calming music he composed. “You have this idea where you are in nature and you are listening to something that is powered by nature,” he said. “I think that's perfect.”And we'll meet a listener who prefers to go by Chris, who was an engineer and avid artist who made mosaics and crocheted before developing Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS). It's a debilitating condition characterized by extreme fatigue that can't be improved by rest, and can also include brain fog, pain, and dizziness. It's similar to what many Long COVID patients experience. Chris' condition is considered severe, and caused her to lose the use of her hands, and thus her preferred art mediums.However, Chris could still use her left hand with a rollerball mouse and realized that she could use programs like Chaotica to create fractals that she adds to collages in Photoshop, resulting in colorful collages. “They're just beautiful and I'm doing art again and I'm so happy about it,” she said.Transcripts for each segment will be available after the show airs on sciencefriday.com. Subscribe to this podcast. Plus, to stay updated on all things science, sign up for Science Friday's newsletters.

This relaxation is a calm, low key way to reset and recover from a crash if you have post-exertional malaise (PEM) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). There are no background sounds in this version - just the spoken audio. This relaxation script can also be relevant for those who have long COVID, post-COVID, depression, stroke, endometriosis, fibromyalgia, multiple sclerosis, or other conditions that can cause fatigue, and for anyone who is experiencing fatigue or burnout. Because your body may be feeling uncomfortable or in pain, this ME/CFS relaxation script does not focus on the body. The script includes a long, slow-paced story about a peaceful park. The story can help with rest and relaxation if you're feeling tired even just lying there. This relaxation can help to calm your mind and rest your body when you are too fatigued to do anything. There is some calm breathing at the start of the relaxation, but otherwise this script does not focus on the body. This can be helpful if focusing on your body is not comfortable or if doing so is less relaxing than turning your focus elsewhere. If you prefer to do more body and muscle relaxation first, you may want to listen to a short physical relaxation exercise and then proceed with this one. You can listen to these and all of my other relaxation recordings on my website, https://relaxation-audio.com.   Find the Relaxation Audio with Candi podcast on Apple Podcasts, on Google Podcasts, on YouTube, at http://relaxation-audio.libsyn.com, or wherever you get podcasts. Remember to subscribe so you don't miss an episode!  Check out my book, Peaceful Relaxation Scripts: Group Facilitation Guide, at amazon.com/author/candi.   

Join me in this episode as I sit down with Dr. Jenny Tufenkian, a naturopathic physician who turned her personal battle with chronic fatigue, or what we also call Myalgic Encephalomyelitis, into a lifeline for others seeking healing and vitality. Dr. Tufenkian shares her intense journey through medical school, motherhood, and severe health crises that tested her limits. Her inspiring story is a testament to not just surviving but thriving and empowering others with her innovative approaches.In this episode, we explore the root causes of chronic fatigue and the deep connections between our physical, mental, and emotional health. Dr. Tufenkian discusses her holistic methods for regaining energy, merging functional medicine with emotional healing to foster lasting change. You'll find actionable tips to help you overcome health challenges and embrace a vibrant life.Don't miss this episode where we discuss:The five core root causes of chronic fatigue and strategies to address them.The interconnectedness of physical, mental, and emotional health in overcoming chronic health issues.Dr. Tufenkian's holistic approach to healing, which combines functional medicine with deep emotional work.Actionable tips from Dr. Tufenkian for regaining energy and embracing a vibrant life.Whether you're combating fatigue, looking to enhance your overall health, or interested in holistic wellness, this episode offers a wealth of practical advice.Connect with Jenny Tufenkian: Instagram: www.instagram.com/dr.jennytufenkianWebsite: www.enjoyfullhealth.comRead the blog: https://mandypatterson.com/blog/ Download Fertility & Hormone Success Guide: https://mandypatterson.com/optimize-your-fertility-and-hormones/ Learn more about the Positivity Fertility group coaching program led by myself and Dr. Jeanie Schafly and get on the waitlist. First cohort launching early spring 2024: https://positivityfertility.com/ Book a Discovery Consult: https://mandypatterson.com/fertility-application/ for fertility OR https://mandypatterson.com/wellness-application/ for wellnessEpisode Highlights:[00:01:30] Introduction to Dr. Jenny Tufenkian and her background.[00:04:50] Dr. Tufenkian's personal battle with chronic fatigue during her medical school and the lessons learned.[00:12:20] Discussion on the holistic methods for treating chronic fatigue and the integration of emotional healing.[00:25:40] Dr. Tufenkian explains the five core root causes of chronic fatigue.[00:33:15] Tips for listeners on how to start their journey towards recovery.[00:45:00] Dr. Tufenkian's advice for maintaining energy and health long-term.

Prolific Canadian writer Nora Gold is afflicted with a mysterious disease, Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome), about which she has written a novella, "In Sickness and in Health." Gold discusses how she is able to navigate her life and work through bouts of sickness with Host Llewellyn King.

Continuing our conversation with warrior, Aston Martinez. Diagnosed in adulthood with ADHD and Autism, Aston knows the challenges of managing neurodivergence and her many chronic conditions. Tune in to Part Two as Aston discusses how you can support your neurodivergent loved one and how she handles her anxiety and past trauma when going to the doctor. Aston is diagnosed with ADHD, Autism, Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Narcolepsy, Epilepsy, Chronic Activated Epstein Barr Virus, Myalgic Encephalomyelitis and Trigeminal Neuralgia. Aston continues to advocate as a proud member of the Rare Advocacy Movement and wishes to provide support and connection to the chronic illness community by developing a new app/website. To learn more about the Rare Advocacy Movement, go to https://www.rareadvocacymovement.com. To offer suggestions for Aston's new chronic illness app/website, email notmypain@heroescircle.org.

Reintroducing warrior from S2E9, Aston Martinez. Diagnosed in adulthood with ADHD and Autism, Aston knows the challenges of managing neurodivergence and her many chronic conditions. Listen to Part One as she shares her story and her struggles from multitasking her neurodivergence with doctors, medications, and all her symptoms and emotions. Aston is diagnosed with ADHD, Autism, Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Narcolepsy, Epilepsy, Chronic Activated Epstein Barr Virus, Myalgic Encephalomyelitis and Trigeminal Neuralgia. Aston continues to advocate as a proud member of the Rare Advocacy Movement and wishes to provide support and connection to the chronic illness community by developing a new app/website. To learn more about the Rare Advocacy Movement, go to https://www.rareadvocacymovement.com. To offer suggestions for Aston's new chronic illness app/website, email notmypain@heroescircle.org.

The weekly research round-up includes all recent publications about ME/CFS and Long Covid, which includes the key terms: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, ME/CFS, Long Covid and Post Covid syndrome. The list is inclusive of all research published to keep our community informed, however, this does not necessarily mean we endorse the studies. We briefly highlight and analyse particularly studies which have caught our attention.

The weekly research round-up includes all recent publications about ME/CFS and Long Covid, which includes the key terms: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, ME/CFS, Long Covid and Post Covid syndrome. The list is inclusive of all research published to keep our community informed, however, this does not necessarily mean we endorse the studies. We briefly highlight and analyse particularly studies which have caught our attention.

In this episode, host Haylie Pomroy and Dr. Lubov Nathanson dive into the complex and rapidly evolving world of epigenetics, the study of how your behaviors and environment can cause changes that affect the way your genes work. This field is key in understanding chronic diseases, how they develop, why some people are more predispositioned to get sick than others, and how they can be prevented with lifestyle and diet. They explain the static nature of genomics and contrast this with the dynamic nature of epigenetics. They also discuss the role of epigenetics in diseases like Myalgic Encephalomyelitis, chronic fatigue syndrome, and Gulf War Illness. This conversation provides a new perspective on chronic illnesses, highlighting how epigenetic changes, influenced by our environment and choices, can significantly alter our health destiny. Key points: 00:00 Introduction 03:23 Exploration of the significant epigenetic component in chronic diseases. 08:06 Research on Gulf War Illness and Epigenetics. 12:01 The role of lifestyle and nutrition in epigenetic changes. 16:55 All body systems are interconnected. 20:07 Dr. Nathanson's vision for the future of medicine and chronic illness treatment. 23:24 The importance of considering the whole body in health and disease. Join the 10-Day Cleanse Challenge this February 19, 2024.

About 20% of people who have recovered from COVID-19 experience circulatory impairment, abnormal ventilatory pattern, or Myalgic encephalomyelitis (ME/CFS) according to a 2021 study published in the Journal of the […] The post Living with Long COVID and Myalgic encephalomyelitis appeared first on WORT-FM 89.9.

In this episode, host Haylie Pomroy and Dr. Lubov Nathanson dive into the complex and rapidly evolving world of epigenetics, the study of how your behaviors and environment can cause changes that affect the way your genes work. This field is key in understanding chronic diseases, how they develop, why some people are more predispositioned to get sick than others, and how they can be prevented with lifestyle and diet. They explain the static nature of genomics and contrast this with the dynamic nature of epigenetics. They also discuss the role of epigenetics in diseases like Myalgic Encephalomyelitis, chronic fatigue syndrome, and Gulf War Illness. This conversation provides a new perspective on chronic illnesses, highlighting how epigenetic changes, influenced by our environment and choices, can significantly alter our health destiny. Key points: 00:00 Introduction 03:23 Exploration of the significant epigenetic component in chronic diseases. 08:06 Research on Gulf War Illness and Epigenetics. 12:01 The role of lifestyle and nutrition in epigenetic changes. 16:55 All body systems are interconnected. 20:07 Dr. Nathanson's vision for the future of medicine and chronic illness treatment. 23:24 The importance of considering the whole body in health and disease. Join the 10-Day Cleanse Challenge this February 19, 2024.

This week we will discuss severe Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  Our guest is Galen Warden, the mom to six adult children, one being her son James Strazza.  Galen is now a full time caregiver to James due to the severity of his disease.  Here are her words:  "James was a healthy young man until he very slowly, because of medical ignorance and poor advice, became weaker and sicker following a severe case of the Epstein Barr Virus when he was just 19. After a few years, he slowly lost his ability to drive, to stand in his kitchen and prepare food for himself, then to walk more than a few steps, to use an electric wheelchair, and finally, to even sit up if carried onto a commode. He's been 100% bed bound for three years. What is this bizarre disease that so many medical doctors prefer to pass off as psychological, psychosomatic or self-inflicted? Myalgic Encephalomyelitis was, in the past, known only as Chronic Fatigue Syndrome. An unfortunate name because it's so easily dismissed as simple chronic fatigue, familiar to many with autoimmune diseases. ME/CFS is entirely different. It's a disease not known, not taught, but not rare. Just rarely acknowledged, and more rarely understood.... ME appears to be a post-viral disease. The onset can be caused by Epstein Barr, Dengue Fever, Covid 19, and other viral illnesses. Now, research is so urgent because Long Covid is impacting thousands who are unaware of the potential that they could end up like James. Post-viral Covid could easily continue to progress to Severe ME/CFS if patients are not aware of how to manage their overwhelming weakness and fatigue. They must rest and never push themselves. They need the early support of their families to pick up the burden of making meals, driving them, helping them rest as much as possible. Because, if they don't allow them to rest now, caring for them will become a very heavy burden. These patients, with their desperate families, their disbelieving caregivers and puzzled doctors, are why I'm compelled to add documenting our experience to my long list of weighty obligations."

This month Kelsey sits down with UK author, Jessica Taylor-Bearman to discuss her journey with Chronic Fatigue Syndrome aka myalgic encephalomyelitis, her first pregnancy, and motherhood. For more on Jessica's life and Journey make sure you read her books! Jessica is on Instagram @jayletay

Science is vastly more impactful if it is shared, and this week Dr Euan, Dr Jen, and Dr Shane look at the connections between policy, science, and community. Have you ever wondered how science is translated into interactive, inspiring exhibitions? Melbourne Museum's Experience Developer Mei Liu joins the show to expand on the intersection of science and experience (while also previewing her latest project: Air Playground at Scienceworks). If that doesn't get you out of bed, imagine if you medically couldn't.Myalgic Encephalomyelitis or what's named 'Chronic Fatigue Syndrome' has been met with stigma and controversy since its discovery. In fact, recent studies show that even doctors can have negative attitudes about it. Professor Ros Gleadow (Head, Plant Ecophysiology Research Group) and her daughter Eliza Charley (who lives with the condition) have teamed up to identify knowledge gaps; investigate treatment options; and highlight this very underfunded area of research.Program page: Einstein-A-Go-GoFacebook page: Einstein-A-Go-GoTwitter: Einstein-A-Go-Go

Emily explains what post-exertional malaise is, and highlights the challenges associated with diagnosing and managing ME/CFS. Emily emphasizes the need for personalized care and the critical role of patients in advocating for their own health. This conversation underscores the significance of creating strong support networks for people living with ME/CFS, as well as the broader chronic illness community. They also highlight the value of sharing personal stories to raise awareness and bring about policy changes. Episode at a glance:Advocacy and awareness: Cheryl and Emily discuss the power of patient stories in driving advocacy efforts, and the importance of raising awareness of the complexities of living with chronic illness.Symptom management: Post-exertional malaise, fatigue, pain, and cognitive issues often require a dynamic approach to management. This conversation delves into the importance of tailoring treatment to the specific condition/individual needs, and strategies such as pacing activity.Coping strategies and mental health: Having self-compassion is a key part of coping with chronic illness. Additionally, emotional support aids well-being and therapy can be a useful resource.Importance of having a support network: Cheryl and Emily emphasize the value of connecting with others who have similar conditions to create a sense of community, as well as accepting support from friends, family, and healthcare professionals.Patient/healthcare provider relationship: Emily shares the challenges of obtaining accurate diagnoses and appropriate medical care for chronic illnesses, especially for lesser-known conditions like ME/CFS. Building collaborative, patient-centered relationships with healthcare providers who are willing to listen, learn, and explore treatment options can make a big difference in managing complex chronic illnesses.Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Episode SponsorsRheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! Speaker Bios:Emily Taylor Vice President of Advocacy and Engagement at Solve ME, Emily brings to the organization over fifteen years of policy, organization, and advocacy experience in both the non-profit and government sectors. With five years' experience on Capitol Hill, Emily contributes a keen understanding of both state and federal policy processes while cultivating strong grassroots organization and patient representation. Prior to joining the Solve M.E., Emily served as the director of policy and advocacy for an award-winning autism organization. There she spearheaded major overhauls in disability, early intervention, and education policies. She is also a veteran of several successful electoral campaigns, where she trained others in effective social media and online organization. She received a B.A. with honors in politics and international relations from Scripps College in Claremont and earned her M.A. in American politics from Claremont Graduate University. Emily draws inspiration from her mother who has battled ME/CFS as well as chronic autoimmune and thyroid conditions since 1999.Cheryl CrowCheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.For full episode details including a detailed transcript and video:Coming soon on the Arthritis Life Website. 

Nick Garland is a proud and passionate speaker on trauma, mental health, including physical and mental resilience and overcoming challenges, both within the personal and business sphere. His unique near death experience, return to work and return to military operations is an inspirational snapshot of personal determination, leadership and a humble understanding of mental health. Nick's talks are inspirational, insightful and are based on real experiences. Following a life-threatening injury sustained on the battlefield in Afghanistan – which left him fighting for his life in a month long coma, Nick was determined to recover and return to work. On his road to recovery, he became aware of his trauma experiences and how they impacted many other people – as a result Nick understands intimately how actions impact people both in and out of the workplace. With strong mental resilience, Nick returned to combat operations in Afghanistan, where he once again led men and women through some of the toughest times of their lives.Following a medical discharge from the Armed Forces in 2018, Nick now reflects on his past, linking childhood adversity to the successes he has had both in and out of service life. He discusses growing up with dyslexia and the effects of the debilitating illness M.E. (Myalgic Encephalomyelitis). These experiences and those gained from his time in the British Army have given Nick a unique insight into achieving success by leading through adversity.Nick's Top Tips - say "yes!", more and have amazing experiences. Have far more empathy for others than you currently do. Hosted on Acast. See acast.com/privacy for more information.

Today I talk about grief, the definitions of and similarities between Long Covid and Myalgic Encephalomyelitis, and my Long Covid story. References:https://www.cdc.gov/me-cfs/pdfs/Could-You-Have-MECFS_508.pdfhttps://www.covid.gov/longcovid/definitionshttps://jheor.org/post/1746-economic-effects-of-long-covid-even-larger-than-we-thought

Happy Tuesday! When I was passing through London, UK in July I was able to sit down and chat with Miranda Allen about her diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) In this episode, Miranda looks back with hindsight and explains where it's possible her symptoms began, the years of not really knowing what was going on, how she got a diagnosis, what on earth ME even is, her day to day symptoms, how she manages them and her latest creative endeavours. Some of you might remember Miranda from a previous That's So episode (That's So: Unrest documentary) but we didn't get to chat too much about her story then, so I'm really excited to be able to bring you this episode with a lot more information today! Watch Miranda on Penn & Teller: youtube.com/watch?v=CfGGIQbsrrE EeZeeGo website: https://www.eezeego.co.uk Symptom tracking app Visible: www.makevisible.com And don't forget to connect over on IG and Tiktok, I'm @thatssochronic @thatssochronic | @jessssbrien | #thatssochronic Free monthly newsletter: thatssochronic.substack.com Application form to share your story: https://forms.gle/csebLkwfwAjiLApK9 Disclaimer: Here at That's So Chronic we are sharing personal stories and are not advocating any type of treatment, therapy, procedure or intervention. Everyone is unique so please seek professional medical advice before making any decisions for yourself or for others. Hosted on Acast. See acast.com/privacy for more information.

Fibromyalgia and Myofasciitis are often confused with one another, even by doctors. But, Dr. Prather explains that both are unique and must be treated very differently. In this episode, we talk about:—How Fibromyalgia is an inflammation of the Lymphatic tissue, while Myofasciitis is a dysfunction of the muscles and the fascia material.—Why "poking" 11 different Lymph areas and being able to produce pain is a sure sign of Fibromyalgia. And how Myofasciitis can be diagnosed through palpation and those areas feeling "like a rock".—How 85% of all adults will suffer from Myofasciitis at some point in their lives. And the Rapid Release Therapy Dr. Prather uses in his office that makes a difference for patients who have found no relief from other treatments.—The reason Fibromyalgia is found 85-90% of the time in women. And its association with Chronic Fatigue, Myalgic Encephalomyelitis, Rheumatoid Arthritis, and a shortened life-span.—Why "gentle" is the key word with any treatments for Fibromyalgia patients to get results and relief for them.—The importance of treatments like Chiropractic, Acupuncture, Rapid Release, and Physical Rehab for both Fibromyalgia and Myofasciitis, but the approach and techniques of those treatments have to be used in completely different ways.—Why Acupuncture provides "immediate relief" for both Fibromyalgia and Myofasciitis. But Fibromyalgia should use only one or two points at a time, with Laser and Powder Acupuncture techniques used more often by Dr. Prather than the needles. —The importance of Diathermy for Fibromyalgia patients to increase blood flow and lymphatic flow, while increasing detoxification and boosting the immune system. And why Dr. Prather calls it an "amazing" treatment for Fibromyalgia.—How Dr. Prather says "you are never going to get anywhere" with Fibromyalgia without proper supplementation, which is "a game-changer". And how Dr. Prather estimates about 50% of his Fibromyalgia patients actually have both Fibromyalgia and Myofasciitis.—Plus, hear the details about our upcoming Holistic Integration Open House on Lyme Disease and Tick-borne Diseases on Wednesday, September 27th at 6 p.m. And how you can receive 20% off of tick-borne diagnostics for attending.http://www.TheVoiceOfHealthRadio.com

Even months after a COVID infection clears, some people are left with debilitating symptoms - brain fog and extreme exhaustion after performing everyday tasks. What does long COVID have in common with ME/CFS - myalgic encephalomyelitis, formerly known as chronic fatigue syndrome? We speak with Dr. Alba Azola, a rehabilitation physician who works in the Johns Hopkins Chronic Fatigue Syndrome Clinic. Plus, Melinda Lipscomb and Whitney Fox share about their experiences living with ME/CFS. They are the co-chairs and co-founders of the Maryland chapter of #MEAction. This interview originally aired April 5, 2023. Learn more about ME/CFS:Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and CostSolve M.E.For long covid fatigue, a strategy called ‘pacing' helps, but at a cost TRANSCRIPT:Sheilah Kast: We're OTR! I'm SK. Good morning. For some people, even months after a COVID infection has cleared, symptoms like extreme fatigue and brain fog linger, interrupting daily life.  Researchers at Stanford University looked at a group of 105 long COVID patients whose symptoms persisted for at least six months. Forty-five of those patients met the criteria for myalgic encephalo-myelitis, previously known as chronic fatigue syndrome. It's commonly abbreviated as ME/CFS. Like long COVID, ME/CFS has a broad range of symptoms. In April, I spoke with rehabilitation physician Dr. Alba Azola, former co-director of the Johns Hopkins' Post-Acute COVID-19 Team.' She now works in the Johns Hopkins Chronic Fatigue Syndrome Clinic. I asked Azola when, during the pandemic, she noticed patients presenting with chronic fatigue… Dr. Alba Azola: Yeah. So it was quite interesting because I had not been treating that population before. When we opened our clinic in April of 2020, we were focused on or expecting to have a lot of critically ill patients coming in for rehabilitation. But we knew that like with other pandemics like Sars-cov-1 or Merce, that there were going to be patients that were not severely ill but had some lingering symptoms. In the summer of 2020, we started seeing this patients with less severe acute illness presenting with symptoms that to me appeared similar to our autonomic dysfunction patients or patients suffering from condition called pots pots. These patients presented with brain fog, fatigue, palpitations on standing, difficulty tolerating, standing. And what's interesting is that we noticed that similarity and we had physical therapists that knew how to manage this patient population, and we started working with them. But there was a subgroup of patients that were not responding to physical therapy interventions that we use for autonomic dysfunction, the same way that we are used to seeing these patients were experiencing severe post exertional symptom exacerbation. Sheilah Kast: Where symptom exacerbation means they were getting really tired after they exerted themselves. Dr. Alba Azola: It's beyond tired. These patients actually will kind of feel pretty good, do a little more than usual. And this is nothing exaggerated compared to their baseline. Like, you know, for example, doing their laundry or cleaning the house. And then 12 to 48 hours after the exertion, they have a myriad of symptoms that flare, including the sensation of heaviness, feeling myalgia, which is that feeling like when you're going to have a viral infection feeling achy in their body. They also have neurologic symptoms like tinnitus or tremors or even worsening cognitive impairments. So it's a little bit different than just doing the activity and then requiring some rest right after you do it. Sheilah Kast: Some long COVID patients may develop ME/ CFS, but others do not. What what are the similarities between long COVID and ME/ CFS? Dr. Alba Azola: In my clinical experience, we see that post-COVID patients can experience fatigue, but not all fatigue is equal. We have patients that experience some fatigue from deconditioning because they were ill for a period of time and did not have their usual physical activity. We can also see some post-viral illness that requires a few months to recover function back to their pre-COVID baseline. But then there's this smaller subgroup of patients that meet the criteria. For me, CFS diagnosis, which like I mentioned earlier, includes severe debilitating fatigue that prevents them from doing their daily activities for more than six months, post exertional symptom, exacerbation, impaired sleep standing intolerance and cognitive impairments. Sheilah Kast: What symptoms of long COVID are not associated with ME/ CFS? Dr. Alba Azola: You know, if you think about it, there's there's not that many, right? But again, not all long-covid patients. Have the same cluster of symptoms. So so like I said, some long COVID patients have symptoms of CFS but don't have the entire picture for the syndrome diagnosis. So, you know, you can have a patient with Long-covid who experiences isolated cognitive impairment without the presence of severe fatigue that, you know, has post exertional symptom exacerbation or any physical fatigue at all and just purely cognitive impairment. So there are several different types of long COVID patients and some of them have the whole picture to receive the diagnosis of CFS. Sheilah Kast: What does treatment look like for this type of extreme exhaustion? Dr. Alba Azola: Yeah. So for patients that have or meet the criteria for CFS, these patients required a very individualized approach. We certainly hone in to teaching them skills of how to manage their energy envelope, how to pace their day to day activities so that they're not expanding beyond what their energy envelope is. So we do some education. We have occupational therapist or physical therapist that can help the patient implement energy conservation strategies into their day to day activities. Sheilah Kast: Give me an example. Dr. Alba Azola: A simple example would be for cooking. Instead of preparing a meal all at once, break a task into smaller pieces so prep the meal seated without being standing and taking breaks in between so that you don't push through the entire process of prepping the meal, cooking it, and serving all in one one time. Right? You want to break up task into smaller pieces. Sheilah Kast: This is on the record. I'm Sheilah Kast speaking with Dr. Alba Azola co-director of the Johns Hopkins Post-Acute COVID 19 team, about the connections between long COVID and Myalgic Encephalomyelitis, previously known as Chronic Fatigue syndrome. What are you hearing from patients about what it's been like to seek treatment for ME/ CFS After COVID. Dr. Alba Azola: The treatment available for chronic fatigue syndrome are limited, and providers, medical providers that understand the diagnosis of CFS and the treatments that can help the patients manage their symptoms is even more limited. So prior to the pandemic, patients with had a really difficult time finding longitudinal providers that could help them. There were very few in the nation with long waitlist once the pandemic hit and providers that were like me that were following patients post-COVID started to notice the relationship. We've been sharing the knowledge that has been accumulated through the past decades of this, specialists that have been treated MS patients and trying to spread the clinical pearls that this clinicians have been utilizing. So it's been really interesting now. The patients with long COVID in general have a difficult time navigating the medical system and accessing care. And now we have an even larger number of patients requiring chronic fatigue management. And we're certainly not enough in terms of the post-COVID clinics and the few specialists that were out there in order to be able to provide the care needed for the millions of patients experiencing long COVID and a large number of them qualifying for CFS diagnosis. Sheilah Kast: President Biden and Congress are ending the National Emergency and Public Health emergency declarations. What what comes to mind as you reflect on the three years since the pandemic hit the US? Dr. Alba Azola: It's an interesting time certainly to to see that, you know, the society has. Basically got past the pandemic and people are not using, you know, general precautions like masking in public spaces or crowded spaces. I almost want to invite them all to my clinic. Let's see how this virus can really affect people in a chronic way. For some of my patients, they're going on 2 or 3 years of having disabling symptoms. So I think it's it's a little bit exciting that the numbers of people that are dying from COVID are going down and that we're so good at treating it. And we have developed treatments and preventative strategies. However, patients that do have the COVID infection are always at risk of developing long-covid. And it's sometimes those people that don't feel the need to protect themselves because they're young and healthy that, you know, are basically playing Russian roulette in terms of getting an infection and developing long COVID. We think about 10% in a very, very conservative estimate, about 10% of people that contract COVID will develop long COVID symptoms. Sheilah Kast: Seeing the needs of your patients, a re you concerned that the end of the formally declared emergencies will deprive your patients of of something they need? Dr. Alba Azola: Yeah. I mean I think that there the implications that that has for Medicaid and Medicare coverage in some of our patients it's going to impact their access to care in a medical system where there are clear barriers to care from people with lower socioeconomic status, immigrants, etcetera. So this is just another layer of barrier to access to proper medical care for millions of patients. Sheilah Kast: I'm grateful to you for talking with us. Thank you. Dr. Alba Azola: Thank you for highlighting this topic. Sheilah Kast: Dr. Alba Azola is a rehabilitation physician with the Johns Hopkins Chronic Fatigue Syndrome Clinic. We spoke in April. Short break, OTR. When we're back, advocating for the ME/CFS community. I'm SK. Stay with us! Sheilah Kast: Welcome back to OTR.  I'm SK. We're talking this morning about myalgic encephalo-myelitis. formerly known as chronic fatigue syndrome. The shorthand is ME/CFS. It's a complex chronic disease: a patient's symptoms typically get worse after they exert themselves physically or mentally. While the exact cause is unknown, in many cases, ME develops after an infection.  And that may be true for COVID infections. Some people with long COVID are experiencing symptoms that mirror ME/CFS … and are joining the call for more research and funding.  Melinda Lipscomb and Whitney Fox live with ME/CFS. They are the co-chairs and co-founders of the Maryland chapter of #ME Action.  When we spoke in April, I asked Melinda Lipscomb what MEAction is, and why they started a Maryland chapter… Melinda Lipscomb: So ME action is a global now movement of people with ME and allies who don't have to pardon me . My brain is going to come in and out at times. Sheilah Kast: That's fine. Melinda Lipscomb: It essentially is an advocacy and activism organization, grassroots patient, led, founded in 2016. And essentially we all found each other online and have come together and have done direct action campaigns and movements to bring attention to this long, stigmatized illness. Sheilah Kast: Whitney When did you notice people with long COVID starting to get in touch with ME Action. Whitney Fox: I noticed an influx of long COVID patients within the first few months of the pandemic, as early as March and April of 2020. People were finding us and noticing the similarities in our symptoms and looking for support, looking for help, tips and guidance on how to navigate the medical system, how to navigate these symptoms that are incredibly debilitating and often disabling. And it's it's just snowballed from there. I feel like every every week a friend or an acquaintance is putting me in touch with somebody who's experiencing these long haul symptoms. Sheilah Kast: And and for you, Whitney, what has it been like to see the pandemic leave people with ME in its wake? Whitney Fox: If I'm being honest, it's traumatizing. It's something that I talk about with my therapist every session. Um, we knew this was coming. We warned our leaders that this was coming. It's infuriating to see this happening to other people. It's depressing to see that they're facing the same kind of stigma and disbelief and gaslighting that I dealt with. But it's also really empowering and really encouraging that there are so many of us and people are finally listening and that the long haul COVID patients, they're not starting from scratch. They have this basis of advocacy from groups like ours, and we take inspiration from groups like Act Up and AIDS Advocacy. So we're not starting from scratch here. And that's the really exciting part for me. Melinda Lipscomb: And I'd like to say for me, my trigger was H1N1, the swine flu in 2009, and I never recover from that. So you could say I have long H1N1. So from from the start of this, I was shouting into the void because I knew what happened to me and what I went through. And I know that I wasn't alone. You know, Whitney and I both came into the ME spectrum because of H1N1. And we have found so many others online who have such a similar story. And we truly knew that this was going to happen with COVID. And it honestly, you know, my entire journey in advocacy and in in education and all of this has been don't want somebody to have to go through what I've gone through. Sheilah Kast: Whitney, what misconceptions do people have about ME? Whitney Fox: I think the big misconception is that ME mainly affects middle aged white women. When you don't fit that stereotype, it makes it really hard to access a diagnosis. And that stereotype is is false. Marginalized groups are disproportionately affected, but ME can affect anyone. I think that was one of the challenges with my diagnosis, was that when I was young, they didn't think something like this could happen to a young person who looks healthy. And unfortunately, that led to a very long diagnostic delay until I hit my 30s and became unable to work. Like Melinda said, I basically had to become disabled and bedbound in order for me to find answers. Another one is that it's just fatigue. The name Chronic Fatigue Syndrome makes it easy to reduce ME to that one symptom, but it's a complex chronic illness that affects multiple body systems. I have symptoms throughout my entire body that can be attributed to me, and it's the kind of fatigue we're talking about really needs its own name because it's not your standard definition of of fatigue. It's fatigue that's lasted six months or more. It's not caused by ongoing exertion. It's not relieved by rest or sleeping. And it's causing a huge decrease in function that affects our ability to do routine daily living activities. 75% of patients are unable to work and 25% are housebound or bedbound. And the CDC even acknowledges that most patients are undiagnosed. So most people are dealing with these symptoms and they have no answers and nothing that they can do to really address the symptoms. Sheilah Kast: That's Whitney Fox, who is living with ME/ CFS or Myalgic Encephalomyelitis Chronic Fatigue Syndrome. This is on the record. And I'm Sheilah Kast. Also with us is Melinda Lipscomb. They co-founded and co-chair the Maryland chapter of ME Action. We're talking about the group's advocacy and how that has been shaped by long COVID. And Whitney, I wanted to pick up on that. The US Government Accountability Office says as many as 23 million Americans are suffering from long COVID, and as many as 1 million of them are unable to work because of it. Whitney, what is ME Action advocating for right now? Whitney Fox: One of the things that we're working on here in Maryland is establishing contacts and connections with our state legislators and with the more administration. We have a new governor in place, and we really want to try to make contacts with them and work with them on a state level. What we can do here in Maryland, we're continuing to do awareness events. May 12th is ME Awareness Day, and we do proclamations on the county, state and city level to recognize May 12th is ME Awareness Day. We are meeting with our congressional representatives later in April as part of Solve ME and Solve long COVID Advocacy Week to urge for research funding. There is so, so much that we need to do surrounding this illness, but mainly it's we need people to be aware of what this is and and ways and care. Yeah. And we need ways to manage this and navigate this transition from being a healthy, active part of our community to being a person with a chronic illness that's disabling. It's a really hard transition, especially for me. It's been really difficult to unlearn my internalized ableism and give myself compassion and grace as I'm dealing with this incredibly difficult illness that has no support. Sheilah Kast: Melinda What advice would you give to people who have long COVID and who are experiencing symptoms that mirror ME? Melinda Lipscomb: The first thing that I always say is listen to your body and believe yourself. For so long I know I personally it was, you know, put off to stress. It was put off to burn out. I was just overworked. You know your own body and you know that there's something going on. And the difference between you've experienced tired and fatigued before. And this is different to know that there are resources out there you might not be able to get it from your doctor or going online and you know, some of the med sites and finding it easy. But there are many of us out there and you can find us and connect with us through these different support organizations or advocacy organizations and through social media. And third, don't push yourself. You know, we we've grown up in this society where you're supposed to be on all the time and doing all the time. And it's about the hustle when it comes to ME and long Covid, it means that it can hurt you and it means that it can disable you. So rest, you know, even if it's just 30 minutes here a night off there, those things can keep you from the me turning into ME or ME getting worse. Whitney Fox: One more thing I wanted to add to what Melinda said. I want long COVID patients to know that long COVID is recognized as a disability under the ADA and they have access to benefits and protections because of that. I didn't know how to advocate for those things when I first became ill, which is part of the reason why I pushed myself until I became bedbound and unable to work. But there are a lot of accommodations that could really help people at the onset of this so that it doesn't worsen or lead to things like remote work, flexible work hours, using mobility aides, noise canceling headphones, dim lighting and of course COVID mitigation measures, trying not to catch it in the first place and trying not to become reinfected, wearing masks, air filtration. Those are things that we should be fighting for and that a lot of people don't have access to short term and long term disability benefits. But using those when you need to have a prolonged period of rest to fully recover from this illness before jumping back in, I cannot recommend that enough. I wish I had done that with my onset, but like so many of us, I just I just kept pushing through until I couldn't anymore. Sheilah Kast: Wow. Thank you both for telling us about this. Whitney Fox: Thank you. Thank you, Sheilah. Melinda Lipscomb: Thank you so much for having us today. Sheilah Kast: Melinda Lipscomb and Whitney Fox are the co-chairs and co-founders of the Maryland chapter of #ME Action. We spoke in April.  Day before yesterday, August 8th, was Severe ME Day -- a day of remembrance for those who have died from ME/CFS or are experiencing acute symptoms. Since our last conversation, Melinda Lipscomb's condition worsened and she is now suffering from Severe ME. I'm SK. Thanks for joining us, OTR.  Hope you'll come back tomorrow.  Do you have a question or comment about a show or a story idea to pitch? Contact On the Record at: Senior Supervising Producer, Maureen Harvie she/her/hers mharvie@wypr.org 410-235-1903 Senior Producer, Melissa Gerr she/her/hers mgerr@wypr.org 410-235-1157 Producer Sam Bermas-Dawes he/him/his sbdawes@wypr.org 410-235-1472

Yay! It's Tuesday! Which means a brand new episode of That's So Chronic! Today's episode is with Ruby Quinn, and we are chatting about her diagnosis of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), endometriosis, and ADHD (attention deficit hyperactivity disorder). In this episode, Ruby starts by sharing her story of her ME/CFS diagnosis, and takes us through how she got a diagnosis amongst lockdowns, she describes her symptoms and how she manages them, as well as explaining how she navigated going to university at the same time. We then discuss her diagnosis of endometriosis, which - probably comes as no surprise to a lot of listeners - came with a bit of a negative experience of the healthcare system. And then, of course, we chat about all things ADHD and how this diagnosis fits into her life. Feel free to connect over on IG and Tiktok, I'm @thatssochronic @thatssochronic | @jessssbrien | #thatssochronic Free monthly newsletter: thatssochronic.substack.com Application form to share your story: https://forms.gle/csebLkwfwAjiLApK9 Disclaimer: Here at That's So Chronic we are sharing personal stories and are not advocating any type of treatment, therapy, procedure or intervention. Everyone is unique so please seek professional medical advice before making any decisions for yourself or for others. Hosted on Acast. See acast.com/privacy for more information.

Chris Armstrong, PhD was first introduced to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) through research into metabolomics at the University of Melbourne, Australia. As he delved deeper into his work, he discovered its connection to ME/CFS patients, and empathized so much with their plight – and the lack of resources, funding, and research available to both patients and clinicians – that he made it his mission to continue research in this field in the hope of finding a cure. Since publishing his first ME/CFS metabolomics study in 2015, he has continued research into the disease, spurred on by patients whose stories have moved him. As the Open Medicine Foundation's Science Liaison, Chris works on collaborative studies with their partner organizations and helps to translate scientific language for the public. He is also a Visiting Scholar at Stanford University.Key links mentioned in this episode:Open Medicine FoundationOMF on FacebookOMF on TwitterOMF on InstagramTune in as Chris shares...- how he got involved in ME/CFS research- his main area of expertise: metabolomics- that ME/CFS outbreaks can be traced back as far as the mid-19thC, with symptoms  commonly related to significant concerns with fatigue, sleep, pain, brain fog, and a 50% loss of general function- a description of PEM – post-exertional malaise – which is the main component of ME/CFS- that there are up to 50 symptoms associated with ME/CFS, but the main five are: PEM, fatigue, unrefreshing sleep, cognitive impairment, and pain- that ME/CFS is highly comorbid with fibromyalgia and other invisible illnesses- that ME/CFS was originally described as a flu- or polio-like illness; and was first properly explained by the Ramsay definition and given the moniker of “Myalgic Encephalomyelitis”- that patients need to have ME/CFS for 6+ months in order to receive a diagnosis- one of the major schools of thought with regard to ME/CFS: that it stems from a dysfunction of stress response in the body; it's possible, however, that bacteria and other pathogens may also play a role in onset- that 1 in 200-300 people has ME/CFS- that ME/CFS is NOT categorized as a rare disease; but it's treated by the medical community as such – creating stigma through lack of research and understanding- that ME/CFS has been commonly misdiagnosed as a form of hysteria – both in the past and in the present- that very few clinicians dig in deep enough with their patients in order to give them an ME/CFS diagnosis – but that burden is not just on doctors, as diagnostics and treatment guidelines need to be standardized in order to support their work- that the Open Medicine Foundation was built to provide effective treatments for ME/CFS patients- that meeting patients has inspired him in his work, even from the very beginning- the desperate need for funding for continued research into ME/CFS- the politics of funding medical research- that ME/CFS is often considered to be more a psychological than a physiological illness- that the National Institutes of Health (NIH) has been more receptive than some Aussie governing bodies when it comes to research into ME/CFS- the biggest bright spot in ME/CFS: the momentum of funding for research- OMF's collaborative research initiatives with Harvard, Stanford, and others- that ME/CFS could be a collection of several diseases, and not one disease in and of itself- the importance of specifics in diagnostics- why medicine needs to be patient-centered- the importance of pacing in order to avoid a crash related to PEM Get full access to Uninvisible Pod at uninvisiblepod.substack.com/subscribe

Actor and baker Cory Anderson talks about dealing with the effects of myalgic encephalomyelitis (ME), which she contracted as a result of getting COVID. It's had a dramatic effect on her life, not least because of the struggle just to get a diagnosis. It's also led to Cory becoming part of a growing community of...

I'm back today with my friend Whitney, who just like me, has ME/CFS. Today we talk about our fear of COVID, with the context that we're already ill. We chat about…→ Whitney's arrest story?!→ What happens when you get COVID plus ME/CFS?→ Going out in a COVID world when you have ME/CFS…→ and more! Follow Whitney on Instagram! Mentioned Instagram accounts... → Fran Haddock→ The Physics Girl Check out these organizations...→ #MEAction Maryland→ Solve M.E.→ The Bateman Horne Center Subscribe to the show to be notified of new episodes, and make sure to follow the show on Instagram @thatchronicthing. You can also stay in touch with Cathy directly on Instagram @indoorcathy. "Glitter Blast" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Episode 83 of the Long Covid Podcast is a chat with Ryan Prior, journalist, producer, author & advocate. Ryan chats about his experiences with ME and how he saw the wave of Long Covid coming long before many of us did. We chat about his thoughts on many aspects of Long Covid & chronic illness in general, as well as his new book - The Long Haul.Buy "The Long Haul"Ryan's website Support the show~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~The Long Covid Podcast is self-produced & self funded. If you enjoy what you hear and are able to, please Buy me a coffee or purchase a mug to help cover costs.Share the podcast, website & blog: www.LongCovidPodcast.comFacebook @LongCovidPodcastInstagram & Twitter @LongCovidPodFacebook Support GroupSubscribe to mailing listPlease get in touch with feedback and suggestions or just how you're doing - I'd love to hear from you! You can get in touch via the social media links or at LongCovidPodcast@gmail.com

This week I have my friend Whitney Fox joining us! Just like me, Whitney has ME/CFS. That's right folks — we're continuing our discussion of Myalgic Encephalomyelitis in honor of ME/CFS Awareness month. We'll start with a quick nod to our beloved chronic illness Instagram community, and then you'll hear all about Whitney's diagnosis journey. We talk all about patient-led research, including the founding of the Maryland chapter for MEAction. We chat about... → Our beloved chronic illness Instagram community→ Whitney's diagnosis journey: just like me, she started with mild ME, and spent years undiagnosed! → Patient-led research, including the founding of the Maryland chapter for #MEActionMentioned Organizations→ #MEAction Maryland→ National Institute of Health (NIH)→ Solve M.E.→ The Bateman Horne Center Mentioned Persons → An Interview with Ron Davis, PhD: #MayMomentumTuesdays 2022→ Dr. Bateman on Biomarkers and Wild Socks, by Lucinda Bateman, MD | Jan 8, 2023→ Emily Taylor, Vice President of Advocacy and EngagementSubscribe to the show to be notified of new episodes, and make sure to follow the show on Instagram @thatchronicthing. You can also stay in touch with Cathy directly on Instagram @indoorcathy. "Glitter Blast" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

NEW EPISODE!This week: Tell M.E. In Wrestling!*CW and TW at the beginning of the episode*In honour of M.E. Awareness week (9th-15th May), we talk about Phil's experience of living with the condition, featuring a miserable medical history, a poetry triple threat, Carl becomes a Quack and some (ha!) Wrestling about kayfabe and CM Punk Support the showhttps://www.buymeacoffee.com/tellmeinwr6 - Support the show for the price of a cup of coffee! https://www.youtube.com/channel/UCIQUQn556xUoBGw0_TIwqtQ - Tell Me In Wrestling on YouTube

In this episode, I'm sharing a bit more about my story, along with some information about this debilitating, devastating disease. May is ME/CFS awareness month, and we have a ways to go in raising awareness and working towards a cure!→ Revisiting when I went out on my leave from work and saw my first ME/CFS specialist→ Discussing Post Exertional Malaise (PEM)... what is it? And why is it such a big deal?! → A bunch of important things to know about ME/CFS→ Ways you can help! Mentioned in the episode→ CDC.gov PEM Definition→ Sammy | MECFS Advocacy→ Go Blue For ME/CFSDonation Recommendation→ Open Medicine FoundationSubscribe to the show to be notified of new episodes, and make sure to follow the show on Instagram @thatchronicthing. You can also stay in touch with Cathy directly on Instagram @indoorcathy. "Glitter Blast" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

So what is ME, you may ask? Read on. Our guest this episode is James Davis who lives North of ME in Washington State. He began life in the Midwest and lived there until he and his mother moved to Colorado to get Mom out of an abusive relationship.   James tells us how he went to college where he majored in history, a subject he hated in high school. It's interesting how often our perspectives change and in James' case, History became quite interesting for him. He then went into teaching, but as he puts it to us, he began experiencing “brain fog” and eventually had to cease teaching as a career.   It took years for him to learn what was happening to him. By the time he learned that he had a disease called ME, Myalgic Encephalomyelitis he had decided to commit suicide. He couldn't kill himself, however, without first talking about his decision with his wife. She convinced him not to leave the Earth quite yet and, eventually, he discovered what was going on with him. Our episode with James concludes with some great life observations from him such as not letting severe depression overwhelm you.   James had many times in his life where he could have just given up and bowed out. He did not. Unstoppable? Yes. James is easy to listen to and his stories are engaging. I hope you enjoy what he has to say including how he now serves on the board of ME International, an accessiBe customer.     About the Guest:   I was born in the Midwest and spent a majority of my youth moving around Illinois and Missouri. I spent some time in California and Colorado as well. I grew up in an ultra-conservative environment, but that never set well with me because I was always curious and wanting to know more. Asking the why of something was discouraged. I spent most of my youth exploring woods and creeks around places we lived. Those are my fondest memories of my youth. My earliest memory is with my dad. It was at night and we were parked next to a beach. My dad carried me down these large rocks with a flashlight. He was whispering to me, but I don't really remember what he was saying, only that he was excited. When we reached the sandy bottom, he shined his light under the rocks where I was amazed to see these little crabs scurrying about.  He reached under there and pulled one out. It was clearly agitated looking for something to latch onto with its claw. I loved seeing this tiny creature for the first time. My dad snatched me up into his other arm and climbed back up the rocks to our car. He sat me down and whispered, “Watch this” and proceeded to make my mother and sister scream in horror as he dangled the crab toward them. We laughed heartily at their expense. Not sure why that memory stuck with me, but it has definitely influenced my sense of humor.   My father was murdered when I was 16. My mother went from one abusive husband to another. One of them was a mean alcoholic and tried to stab me one day over some drunken delusion. After a brief altercation where I defended myself with a greasy cast iron skillet, I decided I had more than enough. I packed a duffle bag and hitched a ride to the nearest town where I spent some time couch surfing and being homeless. I was 16 years old when I left home. I went through a rather destructive phase and abused drugs and alcohol for some time and barely showed up for school. This went on for about a year before my mother found me and asked me to move to Colorado with her. She was trying to get away from her abusive husband, but she wouldn't leave without me, so I moved to Colorado with her and my siblings. I am not entirely certain what it was about the change of environments, but being in the mountains was a life affirming moment that had a profound impression on me. I stopped my delinquency and enrolled in an at-risk school where I finished my high school diploma. Many years later I would come back to teach there. I spent a lot of time biking, backpacking and fishing. I loved to fly fish but I was never especially good at it. I used to scout trails for overnight hikes for the Boy Scouts up in the mountains. I hiked the Grand Canyon, which was both amazing and grueling. I was not well prepared for the extremes. At the top of the South Rim it snowed 4 inches my first night there. I had foolishly decided to not bring a tent and sleep under the stars to save weight in my pack. Needless to say, I didn't get much sleep. After a hike to the bottom of the canyon, I was pleasantly surprised to find a balmy 70 degrees. It had been several days since I had a shower, so the first thing I wanted to do is wash myself. I made a foolish error of leaving my pack at my campsite while washing up along the river only to return and find a wild turkey had consumed an entire bag of granola leaving me short on food for my trip out. It was not a fun hike out. The last mile was excruciating and I was practically crawling. I heard it was called the wall by marathon runners where you have exhausted all of your energy reserves. This same feeling of exhaustion would revisit me years later, but not from over exertion or a turkey stealing my food. After I graduated from high school, I did end up going to college. I was the first in my family to attend college and I loved academics. If I hadn't become ill, I imagine I would probably still be taking classes to this day. My first school was South Western Illinois. I was an honor student, president of the Poetry club and editor of the school magazine. I started my first non-profit with some college friends called The River Foundation. Our thinking was we wanted a venue for novice writers to hone their skills to hopefully someday become professional writers. It was a lot of fun and work, but it fell apart when my college partners decided to go overseas for school or run off and get married. I completed an Associate of arts degree from here and then later moved to Colorado and attended Mesa University for my History degree with a teaching certificate. I was in the honors program here as well and on the editing staff of the literary magazine. This is where I developed a love of Bronze Age Cultures and did my honor's thesis on gender representation in Minoan art and iconography. After college, I was all set to teach high school until I became seriously ill. There were days I was so exhausted I could not lift myself out of bed. I had no idea what was wrong with me and neither did my doctors. At first, they thought I had AIDS, which was really scary. They tested me 3 times over the course of a year, but it was always negative. All my tests where fairly normal with some results just outside normal ranges. Nobody had any idea so I went through a period where new drugs where being thrown at me, some only exacerbating my illness. I remember taking Lyrica for the chronic pain. It helped at first, but over time made me have violent episodes. I am one of those types of people who love their dogs like their own children, so when I felt an urge to strike my dog, I knew something serious was wrong. Needless to say, I was weened quickly off that medicine. I can't remember all the drugs I was given in those years but they were numerous. I think in total, 8 anti-depressants were tried on me all of them made me feel worse. One, made me so agoraphobic, I couldn't leave my house. This dart board medical approach went on for several years being shuffled between specialists without ever having any answers. I was unable to work due to the horrible brain fog and memory problems, chronic pain, sleepless nights and a whole host of persistent symptoms. You can't really teach history if you can't remember the names of the historical figures. Hell, I often forgot the names of close family members. I remember thinking I had to have some horrible disease that was going to kill me any day. Between the unknowing, the chronic pain, the loss of my cognitive function, which was something I deemed very important to me, I just became overwhelmed and decided to end my life. I made a plan that I could carry out unassisted, but before I would execute my plan, I knew I had to make my wife understand my decision. She was such a sweet person and definitely would have blamed herself. I knew I couldn't do that to her. I thought because she saw my daily struggle, she would be sympathetic. Boy was I wrong. After a long conversation and some tearful chastisement, we came to the agreement that I would not give up until all avenues were exhausted to find some answers to this illness. It took several more years before I was finally diagnosed and it happened by pure accident. Because I was unable to work, I decided I needed something constructive to do with my time and was looking into ways of making money. I felt an enormous amount of guilt for not being able to contribute financially. While I was unable to do anything remotely physical, I had a pretty solid background with computers. I had worked several years as a webmaster in the mid 90s. So I started scouring the internet for ideas and ended up reading about a writer in the UK that was making a living writing. In his blog, he was discussing his illness and how it prevented him from working which led him to become a writer. As I read his description of his illness, I was floored that his symptoms were nearly identical to my own. I brought this to the attention of my physician who sent me to some specialists in Denver for a battery of tests and I was finally given a name to what had been plaquing me for years; Myalgic Encephalomyelitis. It was such a weird combination of emotions as I was elated to have a name to put to this horrible thing, but dismayed that little was known and there was no known cure or treatment. At the very least, I thought it would alleviate some of the shame people were making me feel because, if medicine recognized it, so should they. Things improved somewhat after getting a diagnosis. At least some of my symptoms were being treated and I learned how to cope better. I began writing in earnest and finished 2 fantasy books of a trilogy. Guardians of the Grove, and Daughter of the Forest. It was nice to feel accomplishment again despite the daily struggle to get by. I had trouble performing tasks for my basic necessities, but my wife was very supportive and did a lot to help me on a daily basis. I don't think I could have survived without her help. It certainly wasn't the life I envisioned for myself, but there was enough quality in it to keep me moving forward. Several years after my ME diagnosis, I was diagnosed with prostate cancer. I was only 47 at the time. It really felt like I was cursed at this point. Between ME and the cancer, I was an emotional wreck. These two illnesses robbed me of my ability to become the person I was raised to be. I was raised in that traditional Midwest home where the “man” was to be the breadwinner and work hard for his family, the protector, and all that John Wayne sort of mentality. I didn't talk about my pain, my illness, the struggles I had, all of it was endured silently. My wife of course knew, she was there and could see it first hand, but that wasn't true for everyone else. When I was able to be around family and friends, I was always at my best, because that is the only time I was capable of leaving our home. When I was asked how I was feeling, it was always met with a smile and some pleasantry. This is how I was raised. You simply didn't burden others with your personal tribulations and as a man I wasn't allowed to show weakness. I remember when I was seven years old, I cut open my hand and had to get seven stitches. I was rewarded with money afterwards because I “took it like a man” and didn't cry.   Now, I have cancer and faced with some tough decisions. Unbeknownst to me, my wife's family began to openly question our relationship as I was a drain on their daughter. Now, these people are not mean spirited or malicious, they had genuine concern for the welfare of their daughter, sibling, niece etc. I can't fault them for their concern. It's not like I hadn't raised the same questions with myself. I often thought my wife deserved more than I could offer. My wife however, wasn't responsive to this, but she also has severe co-dependency with her family. She wants to make sure they are happy with her and approve of her. The enormous amount of pressure they put on her, eventually wore her down and they talked her into leaving me and file for divorce. This was happening while I was in the hospital undergoing surgery to save my life. To them, I simply wasn't living up to my duty as a man in our society.   I often wondered if I hadn't clung to those same beliefs, and spoke up about the numerous problems I was going through if it would have made a difference in their minds. I of course have no way of answering that question, but I have become a little more open about discussing my illness. I am not very good at it, but I do endeavor to be honest about my ailment. The expectation that as a man of my generation, I am to suffer in silence and manage to be a provider and protector no matter the personal cost is an unrealistic view. When I was going to college, I tended bar at a local pub. It was mostly retired factory workers who spent their whole lives being providers. Every last one of them were miserable wrecks drinking the days among strangers waiting to die. It was a sad realization and when I became ill, I realized I was trying to be one of them. It's a hard thing to come to terms with when you realize much of what you've been taught is a fallacy. Once I was able to find Facebook forums discussing ME, I almost never saw men among the posters. We were silent visitors lurking among the group trying to find some glimmer of hope for treatment options. It is a difficult struggle for many men to overcome our socialization and reach out for help. It is somewhat opposite for women, who are often deemed to have mental issues. That they are somehow fragile, emotional, and susceptible to delusions. These biases have kept thousands of suffering patients from getting proper care. But this is often the case for many diseases. It wasn't that different for patients in the early days of Multiple Sclerosis or even AIDS. Social biases caused many to suffer unfairly. This is why I joined ME International so I could help educate people with the science and numerous studies concerning ME in hope that we could get beyond the bias and move our understanding of ME forward. My philosophy in life is rather simple. I don't fight the current to be in a place I think I am supposed to be, but rather look for happiness where life takes me. So, once everything settled down from my cancer, I ended up packing up and moving to live in the Pacific Northwest. It has awoken that same sensation I felt when I first moved to Colorado. It's a place where I can feel alive even with this disease. Getting outdoors more often and implementing new diet regimens has increased my ability to function. I am nowhere near the days of backpacking 20 miles over mountainous terrain, but I can manage some short trips if I plan them well and allow recovery time. I often overdo things and end up on my back for days or weeks, but I am living life. When I built my first home, I put a stained-glass kit in the window of my front door that read, “May you live all the days of your life”. That is what I do. I have taken up photography to share all this beauty surrounding me. Every year I make a Calendar of my traveling pictures and give them to loved ones for Christmas. I am able to work a part time job because they allow me to work when I am capable. It feels nice to earn something even if a small amount. I volunteer on the board of ME International to give back to other ME patients and I stay far away from any family stress. I wake up and have my antioxidant shake and listen to some meditation and be thankful for the life I live. While it isn't the life I thought I was going to be living, I have found a place where some happiness can exist, and that is enough.         About the Host: Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog.   Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children's Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association's 2012 Hero Dog Awards.   https://michaelhingson.com https://www.facebook.com/michael.hingson.author.speaker/ https://twitter.com/mhingson https://www.youtube.com/user/mhingson https://www.linkedin.com/in/michaelhingson/   accessiBe Links https://accessibe.com/ https://www.youtube.com/c/accessiBe https://www.linkedin.com/company/accessibe/mycompany/ https://www.facebook.com/accessibe/       Thanks for listening! Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below!   Subscribe to the podcast If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can also subscribe in your favorite podcast app.   Leave us an Apple Podcasts review Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts.     Transcription Notes Michael Hingson  00:00 Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I'm Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that's a c c e s s i  capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we're happy to meet you and to have you here with us.   Michael Hingson  01:20 Hi, there, and thanks for joining us once again on unstoppable mindset. I'm your host, Mike Hingson. And I wish you a pleasant day, wherever you happen to be. Today, we get to talk with James Davis. And he has got a great story to tell a challenging story at times. But I think a very inspirational story. He has been through a lot. He's helped a lot of people. And I met him through accessiBe. In fact, he has been working with our nonprofit partner, Sheldon Lewis, who we got to interview on the podcast, gosh, a long time ago now. And so Sheldon suggested that we should chat we have and James agreed to come on the podcast. So James, welcome to unstoppable mindset.   James Davis  02:09 Thank you glad to be here.   Michael Hingson  02:11 Well, we're really pleased and honored that you were able to join us. So tell us a little bit about you growing up, I love to start that way and just kind of let people talk about their, their world growing up. And I know you had a pretty big challenge. So I'll leave it to you.   James Davis  02:26 Well, I was born in East St. Louis, and I grew up in our area around St. Louis most of my life and some of the Midwest boy and moved around a lot didn't stay in any particular place for any length of time. And yeah, it's a mom went through several marriages. And so you know, I had some challenges with that. And yeah,   Michael Hingson  02:56 what what year were you born?   James Davis  02:58 66.   Michael Hingson  03:00 Okay, well, I beat you by a few years. I was born in Chicago in 1950. So, Midwest also, I moved to California when I was five. But my wife constantly told me no matter what, you weren't here for your first five years, so you're not a native.   James Davis  03:18 I did live in California for a couple years when I was apparently from about 18 months old to about two and a half, three years old. Something like that. My mom said in Santa Barbara. Oh,   Michael Hingson  03:30 well, that's a great place to live. Yeah. And   James Davis  03:33 it's actually my earliest memory because I remember my dad pulling alongside this rocky area next to a beach. And he wanted to show me so she grabbed a flashlight, it was getting dark. And we went down to the beach and he looked underneath these rocks and pulled out a little crab. And which I thought was just great, you know? And suddenly he said watch this. And he carried me back up to the car and proceeded to scare my mother and my older sister half to death with this crab and that's my earliest memory in life. And it's probably also where I get my honor a sense of humor as well.   Michael Hingson  04:16 Well, no, no one recency humor isn't isn't is the big problem. But that was kind of cruel to do but what happened to the crab?   James Davis  04:26 He put it back and then we'll Okay. Remember, it was just a little rock crab or something? Yeah.   Michael Hingson  04:32 Yeah. Well, you So you moved around a fair amount, obviously and so on. And eventually you? You went high school and went to college and all that.   James Davis  04:42 Yes. So I Well, my dad died when I was 16. He was killed in a bar. And then so for about a year or so there I was in just self destruct mode and dropped Go to school. And then my mom got with a guy that was an alcoholic. So I ended up leaving home. And I think I was about 16. When that happened, almost 17. So kind of lived on the streets for a while. And then my mom came to me and said, you know, let's move to Colorado because he was wanting to get away from this guy. And so I agreed, and yeah, and that's that moved sort of changed my life at that point. And I got back into school and finished high school and went on to college.   Michael Hingson  05:36 What did you major in?   James Davis  05:40 I ended up majoring in history, which is a little ironic because I hated history in high school. But what I realized was what I hated about history in high school was It was always my football coaches that were teaching the history and they didn't care much about history, there was no passion. They were all about the football. And so yeah, so when I got to college, you know, the professor's you know, they were passionate about it. And I realized what a fascinating topic it was in. Yeah, so I just fell in love with history.   Michael Hingson  06:17 You just made me think of the fact that a couple of days ago, we interviewed musician Kenny Aronoff and Kenny was and is a drummer, and grew up not really excited about rock, playing in classical orchestras and so on, and then decided he didn't really like classical nearly as much as rock and more modern music. And, and so he, he switched and has been extremely successful. But I hear what you're saying, you know, sometimes our attitudes changed in one way or another. So you like history today?   James Davis  06:53 Well, yeah, love history. Favorite is Bronze Age. So ancient history.   Michael Hingson  06:59 Now, why do you like the Bronze Age?   James Davis  07:03 You know, it's, it's one civilization was really sort of coming into its own, you know. And, and I find that very fascinating. It was a big melting pot, especially in the Mediterranean region. And so what really got me into it was how religion, how they adopted each other's deities and to each other's regions, and it just sort of CO opted them. And it's just a very fascinating development to me, you know, how that came about?   Michael Hingson  07:38 Then Christianity came along and sort of messed up the whole deity thing a little bit.   James Davis  07:45 Yeah, a monkey wrench in there, for sure. Well, you   Michael Hingson  07:47 know, on the other hand, we do progress. And there's value in doing that, and growing and recognizing, hopefully, what God's about. But that's, that's, of course, another whole story. So what did you do after college?   James Davis  08:02 So I did start teaching history at some high schools out there. In Colorado, I was living in Colorado at the time. And because of what happened in my youth, I was really wanting to go to these at risk youth centers, you know, like Job Corps, and there was a place called our five where I also graduated from, and I started working there with them as well. And so yeah, that's what I just started teaching. I just loved it.   Michael Hingson  08:40 Yeah. It's, it's extremely rewarding. And I've always been of the opinion that teachers never get paid or rewarded nearly enough for the work that they do. So I have a secondary teaching credential, but jobs took me in other directions. So I haven't taught professionally as it were. But I think that, you know, in a lot of ways I've always been teaching, so I appreciate what you're saying. So how long did you teach? Or do you still   James Davis  09:11 know I forced retirement so to speak, in 2009, I was having I had been having for several years, some problems, some health problems, and I wasn't sure what was going on. And it really sort of came to head around 2009 And I just the brain fog that I was experienced was so severe, that I really could have I was struggling to keep dates and times names in my head. And so it wasn't good for me to be a teacher in my mind because I wasn't able to present the material properly to the students. At least that's what I was thinking in my head and then it's probably true so so I just quit and and then I You know, I struggled for a couple years and depression and all of that trying to figure out I thought I was dying. I mean, I, I was so sick that, you know, I couldn't even get out of bed some days. And I've never knew any sort of illness that would do this. And doctors have no idea I go to them every few months trying to figure this out. And there was nothing. So yeah, so I just put me into a really deep depression.   Michael Hingson  10:27 What happened? Well,   James Davis  10:31 you know, I was the biggest part of my depression was twofold, one, chronic pain. And the chronic illness itself was very hard to deal with on a daily basis. And then the other thing was, is not been able to contribute to our household, a wife, and, you know, the kids that kids are old enough to move out at that point, but I was, just wasn't in a good place. And I just couldn't see a path forward. And plus, you know, think that I want to die anytime anyway, because I was so sick, that I decided to take on myself to do it myself. So I made a plan. And I was going to, just in the suffering of all this and let my wife move on. And, but I knew I couldn't do it without talking that over with her first because she is such a sensitive person that she would have thought that it was her fault that I did this. And I just couldn't do that to her. So I sat her down, I thought she would be sympathetic, cuz she knew how sick I was. She wasn't very sympathetic. She was actually quite mad at me. And so anyway, we talked and she made me promise not to do anything until we exhausted all of the medical avenues that we could. And so that started me on another journey of trying to figure out what was wrong with me. And   Michael Hingson  12:01 that sounds like it took a while to really figure out.   James Davis  12:06 Yeah, I wasn't diagnosed until 2013. And it didn't happen by accident. I was trying to figure out what I could do to bring some income into our house. Because I knew I couldn't do anything physical. But you know, I had some pretty good computer skills. And you know, I had my education. So I was like, just scouring the internet trying to find something I could do, you know, as I'm able to do it. And I ran across this blog from a young man in Great Britain, or the UK. And as I was reading it, he was talking about how he had become a writer because of his illness. And I thought this is promising. And then he started going through all the problems that he was suffering. And I was just going down and reading this, every single one of the things that he was talking about that he had, I had except for like, one out of like, 15 symptoms. And I was like, wow, that can't be a coincidence. So it took that information, you know, and he said he had me and I took all this to my doctor. And I said, What do you think, is like, I don't know, I have never heard of it. So he sent me to Denver University Hospital, and I went over there. And they did a battery of tests and sent me back and said, I had my LG conceptual immediate mellitus. And that that was the turning point for me, I guess.   Michael Hingson  13:38 So what is me?   James Davis  13:39 Good question. You know, they don't know for sure. I mean, there's a lot of, there's a lot of things that they know about it, but they don't know the actual costs for certain. In my case, it's believed that it was from the Epstein Barr Virus that triggered a post viral thing which happens to a lot of people, some people's, it's one of the herpes simplex viruses, and but it seems to be a post viral illness. not that different from long COVID symptoms are very similar. You know, they've also, with all this research they've been doing, they've just also discovered that Epstein Barr Virus is also associated with multiple sclerosis. And there might be a connection with that disease as well, which has a similar set of symptoms. So to me, and you know, this is just my personal view. It seems to be some sort of post viral illness. And if it's not treated early, caught early and treated early. I don't haven't heard of anybody actually recovering from it. If they hadn't caught it early, but you know, it causes severe fatigue with it. hauled penny or Pam, sometimes it's a post exhaustion, malaise or post exhaust. So I'm horrible with these acronyms. Yeah. It's an exhaustion from anything. It doesn't have to be physical, it could be stress causes exhaustion. And that's one of the key things, chronic pain, muscle pain, joint pain causes a problems with the endocrine system. So our immune system slightly off, T cells don't function quite well. The mitochondria does it produce the right energy, that's one of the big things that they're trying to figure out. So there's a lot of little things and it's just basically a complete system. Everything in your system is off, not by a whole lot, the buy enough to make everything feel horrible.   Michael Hingson  15:56 So once they diagnosed that in you, what were they able to do? Or what were you able to do about it?   James Davis  16:04 So there is no treatment, per se, there's, there's so there's no cure, there's, there's not a whole lot they can do except treat symptoms. So, you know, I was put on some pain pills for the chronic pain, and, you know, and then I started, I developed diabetes in that process, because, you know, my endocrine system was stressed. And so, you know, treated me for that. So they just treat you for the symptoms that you have. And then, but then I started doing my own research. And because you know, my doctor, he admitted he knew nothing about the disease, but he was willing to try anything. So I do I appreciated that. And so I got on the internet started searching and, and I bumped into some forums on Facebook that had information. So what I started to do was some anti antioxidants. So I do a morning antioxidant shake, you know, with my green tea, and some Reishi Mushrooms and stuff and, and I put all that together. And that's how I start my day is trying to get the anti inflammatories into my body. So that's been a big help and make sure the other biggest thing that is getting rest, because sleep deprivation can be a really serious problem for people with me. So those two things really changed the quality of my life.   Michael Hingson  17:33 So I assume you still though do experience chronic pain and so on? Or are you able to deal with most of it?   James Davis  17:43 Yeah, the chronic pain thing has been troublesome because of the opioids Of course. So I've been taking them in for shoot 12 years or more, and actually more 14 years. So at one point, when I went to my doctor, I said, you know, he kept bumping up my dosage, and I was at 10 milligrams. And so you know, it's, it's, I don't want to keep going down that path because that the efficacy is going to fade. And I don't want to keep taking more of this medicine. So he sent me to a neurologist. And the neurologist started me on three different pain pills that I would rotate every three weeks. So it was the Vikatan equivalent oxy, and I forget what the third one was. And so I was doing that I did that for a very brief time, I realized that I was getting dependent on it in a way that was very unhealthy. And so I took myself off of it. And from that point on I realized I had to manage it myself. So what I've learned over the years so I don't end up getting an addiction problem is I just take the minimal amount that I need just to get through the really rough patches. So I only take all my pain gets above a five and in no other time I never take it more than two or three days at a time. So so I've had to manage that aspect of it quite a bit.   Michael Hingson  19:19 Have you have you found any kind of natural remedies or not necessarily Western medicine kinds of things that help or have you looked into any of that?   James Davis  19:30 I have you know, I took I've tried marijuana both ingestion and smoking and it just wasn't effective for me and a lot of people it does help but for me it didn't you know it it was made me sleepy. So it just made me non functional. And you know, they tried me on some stuff like Lyrica and Gabapentin which Aren't opioid based but the Lyrica ended up making me horribly violent. It's just the weirdest thing because I'm a very passive kind of person. And, and I remember the day I sort of just had this epiphany of what was going on, as I was sitting there watching some television, I had this large dog who was, you know, tall, about 90 pounds and, and whenever he wanted to go to the bathroom, he would block up and lay his head on my lap. And when he did that, I just had this urge to strike at him. And I love my pet, I would never hit my pet. And that freaked me out. And I realized that it was the medicine, so I had to get off of that, and it was helping some. And so that was a benefit. But the side effects were just too much. Trying to take some of the other stuff I've tried. Magnesium helps a lot with with my cramping, muscle cramps, and some of the muscle pain. So I do some magnesium. But I can't take any of the B vitamins, I have this weird thing that when I take certain vitamins, it causes a really bad brain fog to occur. And I'm not sure why that's not that common. It's just something weird with me, I guess. So I've been very limited by try stuff all the time, I've got a whole cabinet over there of supplements and stuff that I try.   Michael Hingson  21:29 Well, but through all of it, you, you obviously didn't go off and execute the plan that you are going to execute. And I bet your wife is pretty happy about that.   James Davis  21:40 Yes, yes, you know, we ended up moving out to the Pacific Northwest, we live in Washington now. And that has been a bit of a game changer for me, it's I feel revitalized. It's new area. It's beautiful here that the country is just gorgeous. And so whenever I'm able, we take these little trips, you know, an hour here a couple hours here and just check out new parks and whatever, you know, beaches and all these beautiful locations. And that led me getting back into photography, I was in photography, when I was really young, I lived with a photographer for a while. And so I got back into photography and, and having that creative outlet has been wonderful, especially for countering depression. Because along with the depression from this illness, you know, I was, for my entire life, I've had seasonal affective disorder. So in the wintertime, it gets really brutal for me. And that photography, and those creative outlets I've found, and some, you know, some lights, some of those daylight stuff, I use all of those techniques. And that keeps me in a better place.   Michael Hingson  22:58 So are you are you still married? Is all that working out? Or?   James Davis  23:03 Yeah, I still still with my wife, and it's great. Yeah, she's a manager at apartment complex. And they've allowed me to work part time, you know, 1015 hours a week, just doing some maintenance stuff, like I take care of their security cameras for more computer tech stuff. And so yes, I'm able to contribute a little something to, to our little home here.   Michael Hingson  23:31 Well, you know, the, the thing that comes to mind is clearly in some senses, you're different, right? You have what people would classify, and I assume that you would, would also agree it's classified as a disability. And as I tell people disability does not mean lack of ability. It's a characteristic. And I've made the case on this podcast many times that not one single person on this planet is without a disability. The problem for most people is their light dependent and you don't do well when it gets dark. Some of us don't have that problem. But you know, you you are different. How does that affect both how you look at yourself or how people treat you what kind of biases and stuff do you encounter because you do have chronic pain and, and the things that you have?   James Davis  24:27 You know, I think the most difficult part of having m e is people only see you when you're when you have the energy and ability to get out and about. So they're only seeing you at your very best. They don't see you. When you come home and you're in bed for three days afterwards, right there. They don't experience that part of your life. So there's this tendency of people believing that there's nothing wrong with you. And I know when me first started Being diagnosed. More broadly, it was mostly women, I think somewhere around 70% or more people diagnosed with the illness is women. And so there was a tendency to treat woman women as that it was all in her head, you know, we have this, especially, you know, 40 years ago is, is very prevalent in the medical community, if they couldn't diagnose something that it had to be mental mental issue. That's what that's been a huge problem there. And then for me, I know, the men that have me, I just recently, like, a year or two ago, joined a men's forum on Facebook. And it really hit home how isolated men become, because, you know, especially men of my age, you know, we're taught that you're supposed to be the provider for your family, you know, and you have to be the protector and all of these things, you have that social construct, and you can't live up to that having me it's just impossible. And that, I think that shame that I felt over that was the worst emotional aspect of this disease is this shame that I felt. And then you know, of course, everybody's not being very sympathetic towards you, because they're only seeing at your best. So, you know, it's just just a bad place to be. So I've learned to not be so silent about it being more open about my illness. Because of that people understand that. Yeah, I am sick, and there's nothing I can do about it.   Michael Hingson  26:45 And you learned not to be so hard on yourself. Yes, yes. It's really part of the issue.   James Davis  26:53 It is definitely in ours. I was brought up watching John Wayne movies, and that's the kind of man I was supposed to be, you know, you get a job at the steel mill, you know, and you raise a family go to church on Sundays, and that's your life. And I was just too curious. And yeah, it just wasn't the thing for me. So.   Michael Hingson  27:19 So you, you deal with it?   James Davis  27:21 Yeah, yeah, you just you find a path forward and then move along.   Michael Hingson  27:25 And it is about learning. And it's always about education. And a lot of times when we find that we're not feeling very positive. If we don't grow, and we don't learn, we never figure out ways to deal with it. And that sends us down a spiral that isn't good, either.   James Davis  27:44 Yes. Well,   Michael Hingson  27:46 so you talked about photography. So do you do photography now professionally, or anything like that? Or what do you do in that regard?   James Davis  27:55 Yeah, I do it in the classification that they call an enthusiast. So I don't typically make money on it. But I do have some decent equipment. That $5,000 of photography equipment that professionals I mean, the guys that do this professionally, they have 50 100 grand in equipment, it's really expensive way out of my budget. It's taken me five years to build up what I've got. So yeah, I do that. And the nice thing that I do with that is because when we have family and friends that come out and visit us, you know, I take visit, I take pictures of their visit and all the places that we go to, and then for Christmas, every year, we make these little books through Shutterfly, you know, I just create these books and send it to them as a Christmas present to thank them as more of a thank you for their visit, and little memory. And then I also do calendars that we send all of our, our families, my wife's family, my family, so do you ever   Michael Hingson  28:58 sell any of it? Or is it all just basically for fun and to help you and reward you?   James Davis  29:06 It's been more as a fun thing to do. And, and for me, you know, it's personal enjoyment and that creative outlet. But, you know, I have several family members saying that I should try to make money at it. And I guess I want to look into it. I just haven't at this point because it's just, it's just been, you know, it's something I enjoy doing. It's like, if you enjoy walking on the beach, you don't just walk on the beach. So I joined started registered photography, right. So   Michael Hingson  29:38 similar interests that you mentioned a little bit about the fact that you like to write and so on, tell me more about that if you would.   James Davis  29:46 So, in college, I started writing in b&n poetry clubs, and ended up on literary magazines of both college So I want to. And so that really sort of stir my desire to write, you can't really make money at poetry. Do be honest, I'm not that great at poetry. I just love doing it as a personal exercise expungement motions and that sort of thing. But I ended up trying my hand at writing novels, and I did have written two novels to date. And I'm currently working on the third of a trilogy. So, and my favorite genre has always been, I think one of my first books that I ever read was The Hobbit. I love fantasy genres. So. So I wrote some fantasy books. But thing that I did differently was I used my history background, especially with my love of Minoan culture, as part of my world build worldbuilding. So I have these these matriarchal cultures in my book that that, that i is the focus of the book. And so it's yeah, it's, it's, that's been really fun and rewarding.   Michael Hingson  31:11 Have you so you publish them? I assume? Did you do it yourself? Or do you have a publisher   James Davis  31:16 self published? Just, yeah, I don't really promote myself, have a really hard time promoting myself on anything. I'm just not a salesperson at all.   Michael Hingson  31:27 Well, you know, what, if people liked the books, there's probably some value in it. Are you selling some, you know,   James Davis  31:34 a get these little trickle sales. So I get, you know, like, one, two, probably, maybe 10 or 12 books sell a year, something like that, you know, not a lot, but just kind of trickles in? Well, everybody has reviewed it and loved it. So   Michael Hingson  31:52 well, there's a message there somewhere, I would think,   James Davis  31:55 yeah, yeah, I think they're good books. Well,   Michael Hingson  31:58 and obviously, if you've had good reviews, somebody else does. So maybe, maybe you'll get some visibility because of our podcasts, because we certainly will be glad to feature the book covers and so on as part of what we do, which is, which is, which is great. Love to do that. So when will your next one be finished?   James Davis  32:20 You know, so hard, because the brain fog that I get from the enemy is very prohibitive to writing creatively. So, you know, and so I can't say for sure, you know, I was hoping to actually have it done last year. So, you know, it'd be nice if I could have it done by next summer, but there's no guarantee of that.   Michael Hingson  32:43 When was your first one published?   James Davis  32:46 My first one was published in 2014. I think then my second one I published in 2017. So it's taken me about four years to write a book. So I'm a little overdue for my third book.   Michael Hingson  33:00 There you go. What was the name of the first one?   James Davis  33:03 Guardians of the grove? The boatman Chronicles,   Michael Hingson  33:07 Guardians of the Grove, gr O. V. Okay. And what was the second one?   James Davis  33:12 Daughter of the forest?   Michael Hingson  33:15 Okay. And the third one, we'll have to wait till it comes out.   James Davis  33:19 Yeah, I haven't got a name for that yet. Because currently to see how the story unfolds?   Michael Hingson  33:25 Well, that's actually an interesting topic. Because a lot of times I find in talking to writers, especially when they're dealing with fiction, sometimes you never know where the book is gonna take you the characters take over. And it becomes a, perhaps a whole different thing than what you originally thought, but at the same time, it becomes a better thing than maybe what you thought.   James Davis  33:48 Yeah. I mean, I had my core characters, my first thing I did was I sat down with my core characters, like four main characters, and I, and I mapped them out what kind of personality they were going to have. And then the next thing I did was kind of build by my mythos of the of the world. So what was the religions? What's the politics and all of this? So when I was done with a world building, that's when I started writing. And you do realize that the structure that you gave that character in the beginning really dictates if you're doing it organically, at least really dictates how they progress in the story. And things that you thought were going to work actually don't work and you got to shift gears, and that I didn't mind that it's actually been kind of a rewarding thing to experience X. I didn't know that was and I'm not sure if all writers experienced that. But that's certainly been the case for me.   Michael Hingson  34:48 Well, and you know, it's, it's fun. I have not written fiction. I've written two books so far. And we just submitted a draft of a third one But it's been nonfiction I haven't figured out how to do for me fiction yet, and I had just haven't come up with it. So maybe one of these days that will happen, because I think there's, I love fiction because in reality fiction a lot of times is really an author speaking to us about their ideas and their attitudes and so on. And they use a fictional setting, but the reality is, it still is something that can teach us a whole lot.   James Davis  35:30 Yeah, yeah, I think if you got strong characters, that's definitely the case. One of the things that really sort of had this character who was a mother, who, whose husband gets killed early on, and, and I wasn't gonna plan on doing a therapy, it was just more of a catalyst for my book. But, you know, the feedback that I get got from that first book, everybody loves her character. So I had to rewrite her to continue her story arc through the whole series, because she was so loved so well. So those things happen as well.   Michael Hingson  36:05 Again, a message, isn't it? Which is, which is cool. Well, I know I'm excited to hear about the new one when it comes and I will have to go hunt down the the first two. You've published them as Kindle books, have you created audio versions, by any chance?   James Davis  36:21 There's an audio version of the first book. I was haven't got an audio version of the second book. I was going to use the same woman that did the first book, but I have lost the ability to get in touch with her. So I've got to find somebody to do that part for me to door.   Michael Hingson  36:40 So is that first one on Audible? Yes, it is. Okay, great. Well, that's, I will go hunted down. Yeah. And I hope that you're able to, to get the second one done in an audio format as well, that will be fun. You don't want to leave people hanging, you know?   James Davis  37:00 Yeah, no, that's everything I read. They said, You know, if you're doing a trilogy, like I'm doing, you don't really have good sales until you finished it, because nobody wants to start a series and ended up like, you know, like George Martin right now, where everybody has been waiting for, you know, over a decade for the book, you know, it's so good. So hopefully, I'll get them all out and get them all in audio here soon.   Michael Hingson  37:24 Yeah. Well, George Martin had several books out. And of course, he also was fortunate to have a TV series come out of it, too.   James Davis  37:32 Oh, yeah. He's amazing. Writer. So lots of respect there.   Michael Hingson  37:36 Yeah. So I love people with imaginations. I, I've been a Harry Potter fan. And I would love to see JK Rowling do something to continue that although I don't know that she will. But you know, the original seven books. And then there was a play, which I think wasn't really as imaginative as the the first seven. Of course, she's also written under another name to publish some detective stories. And she's clearly a good writer.   James Davis  38:05 Yeah, yeah. She's got an amazing story. Yeah, I love her work.   Michael Hingson  38:10 Yeah. And she's very creative. And she does good mysteries. So when I can't figure out a mystery, and we get to the end, and I really didn't figure it out. I love that.   James Davis  38:22 Yeah, that's hard to do these days.   Michael Hingson  38:25 It is. A lot of times, I'm able to figure it out before the end, when you're dealing with a mystery, but a good mystery is a puzzle. And yeah, maybe you can figure it out. So I in some, I enjoy figuring out because it really tests my brain, but then the ones where I don't figure it out. I can't say that I can complain about that. Because obviously, they did a good job. As long as when I go back and look at it afterward, I can see that the clues were really there to get it. Right. I just didn't, you know, they they hidden and didn't, I won't say hid them. But they put them in so well that you don't necessarily see it, which is   James Davis  39:05 subtle. What I really irritates me about other authors is when they take a character and they to advance the plot, they make the character do something that's out of character. Yeah. Without a catalyst. Right. You know, when somebody's a very passive person, and, you know, something tragic happens and they they become more aggressive, right? That's fine. But if nothing happens, they just all of a sudden become aggressive, then there's no reason for that. Except you're trying to make the plot move your characters follow the plot instead of your characters driving the plot. Are you Yeah.   Michael Hingson  39:45 Are you trying to do it to sell? Yeah, and do you think you got to do that and good character analysis and good character development? I would, I would think, tell you not to just go off and change a character unless you Something as you said, as a catalyst that makes it happen.   James Davis  40:03 Yeah. The other thing that seems to be very big these days is love triangles. And I really get annoyed with those. Yeah, some of them are done really well, and I enjoy them. But most of their doubt are gag. They just seem to be forced. And it's just trying to create drama where it doesn't need to be. Oh, whether   Michael Hingson  40:20 I would call it a love triangle. Have you ever read any of the Stephanie Plum series Janet Ivanovic?   James Davis  40:26 I have not.   Michael Hingson  40:28 Stephanie Plum is a well she became a bounty hunter in Trenton, New Jersey. They're funny mysteries. They're really clever. And she has a guy that she's involved with. But then she's also working with another almost superhero type bounty hunter Ranger who likes her as well. It's not really a love triangle, but it's really fun to to watch the byplay between all of these three of them. And there have now been 29 Stephanie Plum books and they're absolutely hilarious. So if you want an escape, you should go read Stephanie Plum the Stephanie Plum series by Janet Ivana, which they're really fun. It's definitely plum. That's her character. The first book is called one for the money. And the second is to for the dough. And it goes from there. They're they're really funny. And she's kept it very well.   James Davis  41:26 Yeah, one of my first humorous books that I've read was Hitchhiker's Guide to the Galaxy. Yes. An old college buddy turned me on to that. And yeah, that was just hilarious. I just love the irreverent humor.   Michael Hingson  41:39 Do not abuse a mouse   James Davis  41:44 that never ever read. Island. Oh, yes, Robert. Yeah, I don't think he would go over today very well. I mean, his stuff was pretty, pretty cutting edge for the time.   Michael Hingson  41:55 My favorite science fiction books still is the Moon is a Harsh Mistress by him. I think it's the most imaginative book he wrote. I like it better than Stranger in a Strange Land. It's always been my favorite book since I first read it soon after it came out. And I didn't even realize at the time, all about it. But I've read it a lot. And I absolutely enjoy it. It's one of my favorite books. Well, it's my favorite books, my favorite science fiction book.   James Davis  42:24 I always enjoy the fact cow in some of his books. He liked to kill off all the lawyers in the revolutions that he had always found that a little amusing.   Michael Hingson  42:35 Well, you know what the problem is, they keep coming back. It's cool. Well, so. So what do you do today, with your life and all that.   James Davis  42:50 Just basically, the photography, the little bit of work I do around here around the apartment complex. And, you know, we like to travel when I'm able, you know, that's the big thing. We've got a big map, down in the entryway into our apartment, and it's got all these little pins in it from all the different places we visited in Washington and Oregon. And so filling that map in has been my major endeavor these days.   Michael Hingson  43:20 What's the favorite place that you visited here or elsewhere in the world?   James Davis  43:24 My favorite place in the whole world was probably new cranes in Ireland. That was phenomenal. That was really, really the main house. Oh. So it's a it's a giant tomb was dome shaped tomb. And you get this really narrow entrance into it into this big rock chamber. So you get these huge monolithic rocks that have drawings on them and stuff and work your way in the inside, there's like these three separate chambers. And, of course, we don't really know exactly what the culture what all this meant culturally to the time because you know, we're talking 1000s of years ago. And, but it's perfectly aligned with the winter solstice. So the light on the shortest day of the year, shines directly into the back of the tomb, and reflects into those three little chambers in there. And going in there, and just sort of seeing all that in realizing that people from the Stone Age built this huge, huge structure. And it was just amazing. You know, it was It predates the pyramids, so.   Michael Hingson  44:39 So have you ever happened to be there on December 21?   James Davis  44:42 No, I guess it's very, very difficult to get to get a place in there on that date, because it's very tiny to get in. Probably 20 People at the most could fit in there.   Michael Hingson  44:55 Well, of course one has to ask since you've been to Ireland and so on, did you kiss The Blarney Stone.   James Davis  45:01 I went to the Blarney Stone, but I'm such a germaphobe there was no way I was guessing.   Michael Hingson  45:06 I hear you I had been to Ireland. I did not kiss the Blarney Stone either. Nope, not gonna do that too. Too risky. I understand you have to be somewhat of a contortionist to do it anyway.   James Davis  45:17 Yeah. Can't have to lean down and stick your head into a hole or something.   Michael Hingson  45:24 I don't need that. That's okay. No, I think they're, they're more important things to do. I loved Ireland. I very much enjoyed our two weeks there. I was there. Oh, gosh, it's been since 2003. I was there to do some speaking for Irish guide dogs. And that's the same year I was there. It was very enjoyable time. I loved it. And had had haggis pie while I was in Ireland. And enjoyed it. But I liked Ireland.   James Davis  45:56 We were planning our because I had been with my now wife for about five years, already six years maybe. And her family really wanted some sort of traditional structure in our lives as like, okay, let's just go get married. But I don't want to have to deal with inviting family. So we decided to have a trip to Ireland get married in Ireland and do a honeymoon in Ireland. But you can't do that in Ireland. Because you got to be living in the county for 30 days prior to getting married. It's part of their laws. And so then I called England, you know, the England section of UK and I said, Can we do that? They're like, No, there was like 20 days there. So then I called Scotland and called the town in Inverness, Scotland. They were like, yeah, just come on over just have two witnesses get married same day, didn't have any problems with it. So that's what happens. We flew in to Manchester, did a beeline to Scotland got married and then took a cut went over to Belfast and did our two weeks in Ireland.   Michael Hingson  47:08 We, I did a number of speeches over there, we actually had some interactions with Waterford I have a statue of it's actually a double statue was supposed to be a person and a dog but they only had dogs at the time. But I have this this whole very sophisticated platform that has two dogs facing each other. And then literally in print and in Braille it says as one Mike and Roselle, who, of course, was always the dog who was with me in the World Trade Center. And it's nice Waterford Crystal thing, which is really pretty cool. Wow, that is nice. Now that Irish guide dogs people were very kind about that and in all in setting that up. So it was wonderful to do that. I've not been to Scotland and I've not been to England, but I have been Ireland so but I've been to New Zealand. I love New Zealand.   James Davis  48:02 You know, we we thought about taking a trip to New Zealand. But after taking the trip to the UK, I realized that long plane flights do not agree with me for you know, like that was really kind of Miami was just starting to come on. So I wasn't really bad yet. But I was bi that was really rough on my body. So I haven't been on flights yet.   Michael Hingson  48:30 Now I understand that you work with an organization me International?   James Davis  48:34 Yes. When I one of the forums that I got hooked up with on the internet was me International, and a few others, a men's forum and in the advocacy is one of them. So anyway, so I got hooked up with them and and talking to one of the ladies on there, and she was helping me out with some vitamin supplements and whatnot. Colleen and yeah, and one thing led to another and they're like, well, you should join the board if you want. And so I joined the board and became a board member, probably eight months ago or something like that now.   Michael Hingson  49:11 So So what do you do with them now.   James Davis  49:14 So a sitting member of the board, and probably in January, there's going to be new officer positions, I'll probably fill in the role of the vice president that time. And then the other thing that I do form is maintain their website. I just recently did an upgrade to the website and updated it.   Michael Hingson  49:38 And that, of course is how you got connected with accessibe as I understand it.   James Davis  49:43 Yes. So we knew we wanted to have an app on there that helps people navigate the site because you know, one of the things with me people is they tend to be very sensitive to bright colors. And so we were looking at how to manage that. I mean the site it's selfies very pale. You know, it's very subtle colors. But everybody's a little bit different. So we wanted to have an application that would handle that. And one of our board members from Australia, she recommended that I looked into accessiBe being called accessibe. And they turned me on to talking to Sheldon. And yeah, and that turned out to be a great conversation. And we had been going with accessibe ever since cars have been working out. Good so far. I mean, everybody's been very happy with the site. Very happy with the accessibe program. Yeah, no complaints. It's all been positive so far.   Michael Hingson  50:45 Have you? Well, do you put videos and other things like that on the website?   James Davis  50:52 There are a few videos. They're more just information. More than just visual, right? It's just more of there are a few of them more about the history of the disease and how it's progressed over the years that our understanding of the disease?   Michael Hingson  51:12 Have you looked into working with accessibe to address the issue of either having audio descriptions of the video parts that aren't necessarily discussed about or for deaf and hard of hearing people anything regarding closed captioning or captioning of the the word so that people who can't hear it can also then at least read the text?   James Davis  51:37 You know, I don't? I haven't personally, but maybe Colleen or David might have done it because David's been talking to Sheldon too. But no, I have not. And they're the ones that put the video together. So I'm not really sure if that's in the progress or not definitely worth   James Davis  51:55 Me international.org Yes, yeah.   Michael Hingson  51:55 looking at, because accessibe has a whole department and a whole group of people under what you would find on the accessibe website called Access flow, that can help with the things that the artificial intelligent widget itself doesn't do. So it would be good to really try to be inclusive with that stuff is if the opportunity is there. I don't know anything about how all that works, in terms of costs for a nonprofit. And you know, you bring up a good point that me international isn't me international.org?   Michael Hingson  52:32 So the the cost for using accessibe isn't there. And I don't know how it works for the access flow stuff. But it would be worth exploring that to be sure to get the other inclusive parts up to make the website fully available.   James Davis  52:49 Yeah, one of the things that we're working with right now is trying to get the different apps to make sure they're friendly with one another. Also, because we're International, trying to get the website translated. So we got a translation app. And it's not been as friendly as accessibe's, trying to get all that stuff worked out at the moment. But you know, it's, it's having me, I can't devote 40 hours a week to this, I have to do it all for five hours here and there. And you know, whenever I can, so   Michael Hingson  53:17 yeah, well, I, you know, I suggest you explore that with Sheldon let him do some of the heavy lifting to help but he can get you in touch with the right people to explore that. But the whole idea is to make the website inclusive and nowadays is becoming more of a relevant thing to try to make websites work for everyone. And of course, for for us who happen to have a disability as we know, even the CDC says 25% of all Americans have some sort of disability. S

Today's guest is Stacey Ballard, the author of The Fine Art of Waiting. Stacey had chronic illness for the majority of her life, dealing with multiple illnesses and an organ transplant. Stacey uses art and creativity to help her deal with stress, loss, and changes that we experience, teaching people to bring more compassion to their experiences and themselves. The most beautiful takeaway I have from our discussion, is how Stacey wants to demystify art, itself, and journaling, so that it is accessible for others, as expressing creativity helps calm your nervous system, and that helps calm chronic illness symptoms. We cover so many wonderful topics, some include... → How Stacey came up with the idea for The Fine Art of Waiting→ Demystifying Creativity... What fills your soul? → Some of Stacey's favorite exercises from her bookKey messages: 1) We are allowed to feel every emotion that comes along.2) Ways to journal without writing by hand! Don't turn away from journaling if you have physical limitations, there are lots of ways to journal and express creativity! You can follow Stacey at @fineartofwaiting on Instagram Mentioned:→ The Fine Art of Waiting → Chronicon→ Yellow Co→ Michael Singer (Audio Book Living from a Place of Surrender)Subscribe to the show to be notified of new episodes, and make sure to follow the show on Instagram @thatchronicthing. You can also stay in touch with Cathy directly on Instagram @indoorcathy. "Glitter Blast" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Recently someone pulled an oracle card for me that said "Education." Her goal with this card was to inspire me to tell a story. But what story should I tell about Education? I pondered multiple possibilities, and settled on the story that led to my career, abruptly ending with my chronic illness. So was my Education...1) the start of my career2) my career development, itself, or 3) the transition from my career to my new life as a full time patient? And if my chronic illness is an education, what am I learning?! I'm not sure.  Listen and tell me what you think! Wonderful books and resources mentioned in this episode: → Poet Brianna Pastor and her book→ Illuminating Souls: Angel Readings, Soul Mentoring, and wonderful classes like the one I took! → Chronicon→ Path to Empowered AcceptanceSubscribe to the show to be notified of new episodes, and make sure to follow the show on Instagram @thatchronicthing. You can also stay in touch with Cathy directly on Instagram @indoorcathy. "Glitter Blast" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Cynthia Adinig is a marketing specialist turned Long COVID advocate. She is the co-founder of BIPOC Equity Agency which is a diversity, equity, and inclusion agency with a focus on healthcare, policy, and research. She is a board member of SolveME, and a steering member of the Long COVID Alliance. She has testified on Capitol Hill on Long COVID and racism, and has been featured in TIME, The Washington Post, USA Today, and NBC News among others. Cynthia discusses her journey with Long COVID, her life in advocacy, and the work she's doing with BIPOC Equity Agency.

I developed these three easy tasks when I was in a horrible flare a couple months ago. They became My Three Things, which is now evolving into That Chronic Thing 3. This simple formula has greatly helped me end my day with reflection and positivity, as well as a look forward at things to come.Today's episode covers… → Discussing Gratitude→ Discussing "Something for you," plus some items from my cheat sheet! → Discussing ConnectionGet your own template for the Chronic Thing 3 at either of the below Instagram accounts! ꜜꜜꜜSubscribe to the show to be notified of new episodes, and make sure to follow the show on Instagram @thatchronicthing. You can also stay in touch with Cathy directly on Instagram @indoorcathy. "Glitter Blast" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Life Hacks…. specifically for hair! Why? Because mine is currently a rats nest! Eek! It's hard to take care of your care when you're sick. If you're sick, this may sound familiar to you. Today's episode covers… → My daily fix… the messy top knot.→ My monthly-ish fix… The salon! *Budgeted, Self-Care*→ Grief, still. Thinking about my former life.→ Tips & Tricks for taking care of your hair when you're chronically illFrom the Tips… (not affiliate links, just examples)→ Shower stool→ Scalp Scrub Brush→ Dryer/Diffuser CapSubscribe to the show to be notified of new episodes, and make sure to follow the show on Instagram @thatchronicthing. You can also stay in touch with Cathy directly on Instagram @indoorcathy. "Glitter Blast" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Meet warrior, Aston Martinez. Aston is diagnosed with Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Narcolepsy, Chronic Activated Epstein Barr Virus, Myalgic Encephalomyelitis and Trigeminal Neuralgia. Aston understands biases are part of being human. However, when doctors and medical staff fail to recognize and address their personal biases, they can cause irrevocable physical and mental harm to their patients. Listen as Aston shares her experience with biases in healthcare, their impact on her medical care and mental health, and how these experiences have fueled her passion to raise awareness on living with rare conditions. To learn more about Aston Martinez or the organization she works for called Habit Nest, go to www.habitnest.com.

Hi there, my name is Cathy and welcome to my podcast, That Chronic Thing. I'm here to share my experiences living with chronic illness, including ME/CFS and MS, and offer support and advice for others dealing with similar struggles. This show is a resource for anyone looking for support, advice, and a sense of community as they navigate life with chronic illness. I know firsthand how hard it can be to adapt to a new way of life, managing symptoms, and finding a new rhythm, and doing this all while you're going to a gazillion doctor's visits. But through my own struggles, I've learned to find joy and laughter along the way and I really hope you can do the same. So join me and other chronic illness warriors as we tackle the ups and downs of living with chronic illness together.Here's our agenda for today... The story of MY (Cathy) chronic illness! → The Curry Incident→ Living in The Land of the Undiagnosed→ Going to ALL THE DOCS→ Embracing Gratitude Subscribe to the show to be notified of new episodes, and make sure to follow the show on Instagram @thatchronicthing. You can also stay in touch with Cathy directly on Instagram @indoorcathy. "Glitter Blast" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

Hi there, my name is Cathy and welcome to That Chronic Thing. I'm here to share my experiences living with chronic illness, including ME/CFS and MS, and offer support and advice for others dealing with similar struggles. This show is a resource for anyone looking for support, advice, and a sense of community as they navigate life with chronic illness. I know firsthand how hard it can be to adapt to a new way of life, managing symptoms, and finding a new rhythm, and doing this all while you're going to a gazillion doctor's visits. But through my own struggles, I've learned to find joy and laughter along the way and I really hope you can do the same. So join me and other chronic illness warriors as we tackle the ups and downs of living with chronic illness together.Here's our agenda for today!→ Let's do a little introduction! I'm an open book on social media -- you may already know me. If not, let's go on our first date. → Some lessons from my chronic illness journey that may be common across your journey, too!→ One of my favorite quotes that reminds me to keep moving forward! Subscribe to the show to be notified of new episodes, and make sure to follow the show on Instagram @thatchronicthing. You can also stay in touch with Cathy directly on Instagram @indoorcathy. "Glitter Blast" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

David Tuller obtained his Doctorate in public health from UC Berkeley. He is a senior fellow in public health and journalism at UC Berkeley's Center for Global Public Health.  He was a reporter and editor for ten years at The San Francisco Chronicle, and served as health editor at Salon. He has also written articles about public health and medical issues for The New York Times and the policy journal Health Affairs.  Since 2015, he has been investigating scientific, methodological, and ethical problems with research on myalgic encephalomyelitis/chronic fatigue syndrome. His ongoing series on this issue, Trial By Error, can be found on Virology Blog, the science site hosted by Vincent Racaniello, a microbiology professor at Columbia University.  This episode concludes season one of Chronically Complex. We'll be off in the month of February while we make some improvements to the show. If you have any suggestions you'd like us to consider, send us an email at podcast@meaction.net. We look forward to continuing the conversation in March!