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9 episodes with myalgic encephalomyelitis me
2 episodes with myalgic encephalomyelitis me
2 episodes with myalgic encephalomyelitis me
In our final episode we discuss severe ME. One in four people with Myalgic Encephalomyelitis (ME) are severely or very severely affected. Our guests for this episode are Dr Robin Kerr, a GP with over 10 years' experience in general practice; and patient advocate Helen Brownlie, who campaigns on severe ME through the UK charity which specifically supports people with severe ME, the 25% ME Group.To represent the voice of people living with severe ME, who are too unwell to speak for themselves, we have readings from international ME and Long Covid writing group, the Pillow Writers. These extracts are read by Laura Anne Collier, an #MEAction Scotland volunteer and Avril McLean, Senior Practitioner at Action for ME.ME is a complex multi system illness. Its impact can devastate a person's life. It is a biological condition not psychological as has been wrongly believed by GPs in the past. A useful analogy is that living with ME is like living with a smart phone that only charges to 20% overnight. So, if people use 5% to make breakfast and eat, 5% to wash, 5% to dress, 5% to commute they have used all their energy by 9am and have none left. For someone with severe ME meeting with a GP can use up all their energy for that day, week or month and the impact will show afterwards.Some of the key points from the discussion are listed below: What do GPs need to know about severe ME?Approach needs to be flexible so may need adaptation, eg. allow patient to submit questions to GP in advance, have an appointment by phone and/or a home visits.Risk assessment may be needed first to see benefits outweigh impact on person's health.Sensory considerations: low/no light, soft voice, slow speech, no chemicals.Harm can occur through over-exertion or pushing beyond person's limits.Cognitive behavioural therapy is not curative for ME, and Graded Exercise Therapy has been debunked as it can cause harm.Nutrition – people may be so unwell they are unable to digest food and may need specialist support to have adequate nutrition and hydration.Check new symptoms are not new comorbidities. Common examples are: Postural orthostatic tachycardia syndrome (PoTS) and Mast cell activation syndrome (MCAS).A range of comorbidities can result due to people being immobile.Coding of condition – Quality Improvement work for practicesData in practice needs to be accurate so that practice has a standardised approach to coding so people with ME can be identified and given the support and planning they need. ResourcesLearna CPD module on MELearn about ME webinar for GPsLearn about ME podcast episodesLearn about ME project and NICE guideline for ME
In this episode, we check in with Glen Smetherham as he shares updates on his training journey for the Delirious West 200-miler. Glen's balance of practical preparation and a lighthearted outlook shines through, from his steady weekly mileage to his humorous tradition of crafting jokes for aid stations. He reflects on lessons from the Six Inch Trail Marathon, fine-tuning his sleep strategies, and planning a 24-hour running challenge to raise awareness for Myalgic Encephalomyelitis (ME), a condition his daughter lives with. Glen also emphasises the importance of community, laughter, and finding joy in every step of the journey. Whether he's running trails at Christmas or navigating the logistical challenges of ultras, his story is both inspiring and entertaining. Key Highlights: • Steady weekly mileage at 70 km with plans to gradually increase volume. • Recap of the Six Inch Trail Marathon and embracing a relaxed, social approach. • Glen's humorous tradition of using jokes to boost spirits during long events. • Training for a 24-hour running challenge to raise awareness for ME and balancing this with family commitments. • Mastering sleep strategies for ultramarathons, including practice naps to condition his body. Connect with Us: Subscribe to follow Glen's journey and hear more Delirious West stories! Support his upcoming ME awareness project and share your tips or encouragement – let's show Glen some love. Check out the Delirious WEST event - https://deliriouswest200miler.com.au/ Event Facebook - https://www.facebook.com/groups/1428304207182387 https://fitmindfitbody.co/podcast/
Welcome to the last episode of our leaky gut series! In today's Wellness Wednesday episode, I address the not-so-talked-about link between leaky gut and chronic fatigue, what chronic inflammation looks like, and more insights on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome! Tune in to hear: Issues with antibiotics (0:50) Podcast highlights (1:40) Why you are suffering from Myalgic Encephalomyelitis (ME) (4:33) Same symptom but different root causes for different individuals (5:20) One major root cause of leaky gut (6:17) What is leaky gut? (7:52) Understanding what an immune reaction is (12:23) Why you need to know about lipopolysaccharides (LPS) (13:30) The root cause of chronic fatigue (15:17) The formula for healing leaky gut (19:08) Head to www.paulabenedi.com/episode65 for the show notes. Join my newsletter: www.synergised.info/newsletter Follow me on Instagram: @synergiseduk . P.S. This podcast and website represents the opinions of Paula Benedi. The content here should not be taken as medical advice and is for informational purposes only, and is not intended to diagnose, treat, cure or prevent any disease. Please consult your healthcare professional for any medical questions.
Happy New Year! Please enjoy this redux episode while we're on winter break. In "Traversing Democracies (Episode 131)," Wendy interviewed Kat Ardern. Kat is an artist, a part-time student (Fine Art BA), and a full-time carer for her wife who has Myalgic Encephalomyelitis (ME). She shared her insight and knowledge about the various versions of democracy she has experienced while living and working in New Zealand, Australia, and currently, the UK. They spoke in the unique time frame just after the death of Queen Elizabeth II and during the very short tenure of Prime Minister Liz Truss. Thanks for listening. We're working on a brand new season and will be back soon with new episodes for you! Love, Wendy Sheridan and Robin Renée Facebook: Leftscape Twitter: @leftscape Instagram: @leftscape Email: insight at Leftscape.com
Kat Ardern is an artist, a part-time student (Fine Art BA), and a full-time carer for her wife who has Myalgic Encephalomyelitis (ME). She is a New Zealander who left in 1990 at age 21, in the middle of a recession, to travel to Australia for a six months which turned into four years. She has now lived in the UK for over 20 years. In this conversation with Wendy Sheridan, she shares her knowledge and experiences of living and working within these three democratic systems as well as under a monarchy (which turned super weird with the death of Queen Elizabeth II). Of her current home she says, "We are lucky to now live in a creative community that although has been pushed by gentrification and Airbnb, hasn't lost it's DIY spirit and challenges normalcy at every opportunity. It's definitely not perfect, but it is home." In the Why Is This Awesome? segment, Robin Renée is psyched about reembracing deep listening. Earlier in the show, the 3 Random Facts involve birthday statistics and bodily capabilities of fish and fireflies. In the News, the US Supreme Court takes up the EPA's ability to uphold clean water regulations and voting rights, ongoing protests in Iran after the death of 22-year-old Masha Amini, hurricanes Fiona and Ian, Daylight Saving Time possibly coming to Queensland, and the passing of Sacheen Littlefeather. Things to do: Follow Kat Ardern on Twitter and Instagram. Check your voter registration, volunteer, and donate at Vote Save America. Check out Robin's new wave/post-punk show, Saved By Zero, on Yacht Rock Discord! Get in touch for an invite link. Watch "An Evening With Sacheen Littlefeather -- September 17, 2022." https://www.youtube.com/watch?v=wNHtImiC90o&t=7s Try some deep listening:
Welcome to The Steph Sanzaro Podcast and our first episode of 2022 with Eliza Charley. To all new listeners, welcome. Thank you for being here. To all returning listeners, thank you for your love and patience as I have battled my own up and down health. Your kindness is so, so appreciated. This podcast began in 2019 and it is incredible to see how much it has grown since. I am very excited to be back this year in 2022, bringing you incredible new guests and episodes. We've got some amazing guests lined up in the coming months, so make sure that you are still subscribed so you can stay up to date and aware of when all eps drop. Our first guest of the year is the wonderful Eliza Charley. Eliza is an Australian actor, writer and filmmaker with an alter-ego career as a business strategist and marketing consultant, but today we will be discussing the disease Myalgic Encephalomyelitis (ME), which is commonly known as Chronic Fatigue Syndrome. This was a particularly meaning conversation for me, being someone who also manages CFS. If you have a curiousity about ME/CFS, are looking for tips on how to support an ME/CFS patient, or are wondering if you yourself might have ME/CFS, this episode with Eliza will help bring a lot of things to light for you. We begin todays episode by taking a little look into Eliza's current every-day life and through a quick 'montage' of her 2020 and 2021. Todays episode is all about bringing awareness to ME/CFS, so expect to hear Eliza's personal experience with symptoms, her journey through recovery, remission and relapse, and how she has managed and cared for her body during this time. Eliza has experienced ME/CFS since 2009 after a viral infection saw her health take a turn for the worst. This episode is her journey and heart, bared for all to see. ME/CFS is a confusing and unclear diagnosis and leads to many sufferers feeling alone and isolated, that's why Eliza has become a determined advocate for those with ME/CFS and why conversations like this are so important. This episode centres around: · Being worthy, even as an ill person · How Eliza experiences ME/CFS in her body · Why it's always best to not ‘assume' · How to live with uncertainty and a loss of identity · Why a ME/CFS diagnosis can be confusing · Platforms like Instagram as a resource for connection and information · ME/CFS and comorbidities · Eliza's tips and tricks for management · The spectrum of remission and relapse · What is post exertional malaise? · Treatments, promises and ‘cures' · How to support people with ME/CFS · Brain fog and its dangers · Dealing with expectations and a life you never expected · Why you need to focus on what you ‘can' do · Holding hope for ourselves and others If you would like to reach out to Eliza Charley or find out more about her work and life, you can connect with her on instagram, twitter or through her website. Socials - Instagram and Twitter @elizacharley www.elizacharley.com Socials - Hope Heroes Collective - Instagram @HopeHeroesCollective Patient-led reflections on chronic disease Thank you for being back with us in 2022. Get ready for an incredible year of episodes ahead! If you feel so inclined after todays episode, please feel free to leave a 5 star rating and subscribe for future episodes. Happy listening, Steph xx @stephsanzaro www.stephsanzaro.com
Soh-Yeon (she/they) began experiencing post-viral illness symptoms around 2003. She was formally diagnosed with Myalgic Encephalomyelitis (ME) in 2018. Since, she's been dedicating her free time to advocacy work for the ME/CFS and the Long COVID community. She's a volunteer Community Advisory Council member for Solve ME Initiative and Storytelling & Media Awareness working group co-lead for Long-COVID Alliance. Links/Social Media Instagram: @slee.01190 Resources on ME/CFS or Long COVID Websites: www.solvecfs.org & www.longcovidalliance.org Instagram: @solve_cfs & @longcovidalliance --- Support this podcast: https://anchor.fm/comm-is-hot/support
New research published in Jama Network Open shows that 54% of people with COVID-19 still have persistent post-COVID symptoms at 6 months including: brain fog (23.8%), anxiety (30%), disordered sleep (27%), depression (20%), joint pain (10%), fatigue or muscle weakness (38%), and flu-like symptoms (10%). The study looked at 57 studies with 250,351 COVID-19 survivors. "The burden of poor health in COVID-19 survivors is overwhelming...One's battle with COVID doesn't end with recovery from the acute infection," was the conclusion of researchers at Penn State College of Medicine in an accompanying news release. According to chronic fatigue/fibromyalgia researcher and clinician Jacob Teitelbaum, MD, the disabling effects of 'long COVID' indicate what Dr. Fauci has called post-viral syndrome, which mirrors Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME). "The wide range of seemingly unconnected physical and mental symptoms present in long COVID are the same as those found in CFS and its painful cousin fibromyalgia. They're biproducts of a critical energy crisis in the body connected to hypothalamic suppression. In other words, a circuit breaker in the brain shuts down as a protective response, and until it's rebooted patients will suffer from a plethora of disabling symptoms." "As with post-viral Chronic Fatigue Syndrome, long COVID is a complex syndrome that requires a multi-pronged treatment approach. Fortunately, the NIH has announced an allocation over the next four years of $1.15B for research on the prolonged health consequences of COVID-19 infection. This is 25 times the past annual government funding for fibromyalgia research, which until now was considered a 'Cinderella stepchild' disease mainly contracted by women," says Dr. Teitelbaum, whose landmark double-blind, placebo-controlled study on effective treatment for CFS/fibromyalgia was published in the Journal of Chronic Fatigue Syndrome (8:2,2001). That research found a 90% improvement in quality of life among 91% of patients with CFS using a comprehensive treatment protocol called S.H.I.N.E. He has also completed 3 more recent studies on effective treatment of post-viral CFS. "The downside is that even if researchers discover an effective and safe pharmaceutical treatment for long COVID, it won't be FDA-approved and available to the millions who will need it for at least a decade, probably two. The Warp Speed solution that's already available is the S.H.I.N.E. protocol, which has helped thousands with CFS/fibromyalgia over the past 20+ years." Please let me know if you'd like to speak to Dr. Teitelbaum about the crossover between long COVID and Chronic Fatigue Syndrome and how S.H.I.N.E. could be implemented effectively on a national scale. ----------- About Dr. Dean Fanelli Dean Fanelli, Ph.D. is a patent, regulatory, and transactional attorney in the Washington, DC office of Cooley LLP (www.cooley.com) focusing on issues related to the development, protection, and commercialization of biotech and pharmaceutical products. In addition to Dr. Fanelli's expertise relating to legal issues involved in pharma and biotech development, Dr. Fanelli also understands the business needs of his clients as he has co-founded three biotechnology companies: PhosImmune, Inc. an immuno-oncology company, C-Reveal Therapeutics, LLC, an immuno-oncology drug development company focused on exposing tumors to immune responses and therapies, and most recently AexeRNA Therapeutics, LLC, an mRNA company developing advanced Lipid Nanoparticle delivery systems that reduce the side effects present in currently authorized mRNA COVID-19 vaccines. He is a regular on TV & Radio commenting on Covid-19 & Vaccines & also hosts his own podcast “Politics & Life Sciences Radio.”
"Hello fellow spoonies, my name is Laura. I live in the beautiful state of South Dakota. I'm blessed to be married to a pretty incredible guy, and I'm a proud mama bear to two wonderful human beings. I've been sick for the past eleven years, tho I suspect it actually goes back to childhood. I really fought contributing to the Millions Missing Podcast, because while a part deep inside me wants to hear and be heard, this tiny voice in my head told me it really doesn't matter. Through much encouragement, I told that voice to get lost, and so, here I am." - If you want to read up on the illness Myalgic Encephalomyelitis (ME), Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Fibromyalgia, Ehlers-Danlos syndrome, please visit http://me-pedia.org and https://www.meaction.net - For more info on Ménière's disease, see https://en.m.wikipedia.org/wiki/M%C3%A9ni%C3%A8re%27s_disease - If you want to read up on Raynaud syndrome, see https://en.m.wikipedia.org/wiki/Raynaud_syndrome - To read more about mold related health issues, see https://en.m.wikipedia.org/wiki/Mold_health_issues#:~:text=Exposure%20to%20mold%20can%20cause,time%20and%20nature%20of%20exposure. - If you would like to help further research into Myalgic Encephalomyelitis, feel free to check out the following links: https://med.stanford.edu/chronicfatiguesyndrome/donate.html - https://www.omf.ngo/ - https://www.actionforme.org.uk/ - https://the-sleepy-zebra.com/ - Laura has a blog project that you can find at https://the-sleepy-zebra.com/ - We strongly encourage you to share your own story and testimony, of what it is actually like to live with chronic illness; DM us on Twitter @millionspod, email us at millionsmissingpodcast@gmail.com or find us on Facebook https://www.facebook.com/MillionsMissingPodcast/ - You are NOT alone!
"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
About Dr. Jenny Tufenkian: Dr Jenny Tufenkian is a Naturopathic Physician and Functional Medicine Educator who teaches patients, students and physicians to increase understanding of complex chronic disease. As she educates, she empowers, no matter to what audience she instills new perspectives, awareness and ultimately hope. She sees the potential for a 'positive domino effect' of her work. By guiding others to increase their energy they, in turn, have the vitality to live their purpose, to shine their light fully- and benefit all who cross their path. Dr Tufenkian has been treating chronic illness for two decades. A CFS sufferer herself she had no choice but to dig deep into the literature and uncover the root causes of CFS. Through her research and experience, she developed an effective road map for lasting change in her patients. Seeing them flourish after they had given up all hope. Many of these patients had seen many wonderful physicians but they did not know how to assess all the potential root causes of ME/CFS. Thus she realized she needed to create share her clinical wisdom with the wider medical community. Jenny Tufenkian ND is a licensed Naturopathic Physician who got her training and residency at National University of Natural Medicine (formerly NCNM). She went on to be a sought after adjunct clinical faculty member and ran her own successful private practice in Portland, Oregon. Dr. Jenny Tufenkian holds a BA in Political Sociology from the Evergreen State College. She loves to teach. She and has created on-line and in-person tools for practitioners and individuals who desire to live with more vitality. She is also a mom of two, happily married and loves her time outdoors and in the kitchen. What We Discuss In This Episode Jenny specializes in treating Chronic Fatigue Syndrome (CFS) - a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. CFS is also known as Myalgic Encephalomyelitis (ME). Many people with conditions like CFS/ME will tell you it goes well beyond burnout and exhaustion. Dr. Jenny has personal experience of struggling with this condition and shares her own journey. We talk about how western medicine views and treats this type of illness versus how the functional medicine and naturopathic doctors view and treat this illness. Since this is a very complex condition, Dr. Jenny shares the ONE Thing she feels our listeners can do to boost their energy no matter if they are really exhausted or feeling well. We discuss how and when we eat can impact our energy and what we can do – especially for those who are exhausted? Dr. Jenny also discusses some of the best ways for people to find the answers they need when they are struggling with chronic fatigue. Free Resources from Dr. Jenny Tufenkian LINK to QUIZ Why are you So Tired? Find your root cause! https://quiz.drjennytufenkian.com/sf/96d715b6 LINK to MASTERCLASS free training: https://event.webinarjam.com/register/1/pg43lhx Connect with Dr. Jenny Tufenkian: Website: drjennytufenkian.com FB/LinkedIn/ IG: @drjennytufenkian YouTube : Natural Healing with Dr Jenny ND Connect with Lynne: If you are looking for a community of like-minded women on a journey - just like you are - to improved health and wellness, overall balance, and increased confidence, check out Lynne's private community in The Energized & Healthy Women's Club. It's a supportive and collaborative community where the women in this group share tips and solutions for a healthy and holistic lifestyle. (Discussions include things like weight management, eliminating belly bloat, wrangling sugar gremlins, and overcoming fatigue, recipes, strategies, and much more so women can feel energized, healthy, confident, and joyful each day. Website: https://holistic-healthandwellness.com Facebook: https://www.facebook.com/holistichealthandwellnessllc The Energized Healthy Women's Club: https://www.facebook.com/groups/energized.healthy.women Instagram: https://www.instagram.com/lynnewadsworth Free Resource: Hot flashes? Low Energy? Difficulty with weight management? If MID-LIFE & MENOPAUSE are taking their toll then I've got a solution for you! I've taken all my very best strategies and solutions to help you feel energized, vibrant, lighter & healthy, and compiled them into this FREE resource! Thrive in midlife and beyond - download my guide here: https://holistic-healthandwellness.com/thrive-through-menopause/ Did You Enjoy The Podcast? If you enjoyed this episode please let us know! 5-star reviews for the Living Life Naturally podcast on Apple Podcasts, Spotify, Pandora, or Stitcher are greatly appreciated. This helps us reach more women struggling to live through midlife and beyond. Thank you. Together, we make a difference!
About Dr. Jenny Tufenkian: Dr Jenny Tufenkian is a Naturopathic Physician and Functional Medicine Educator who teaches patients, students and physicians to increase understanding of complex chronic disease. As she educates, she empowers, no matter to what audience she instills new perspectives, awareness and ultimately hope. She sees the potential for a 'positive domino effect' of her work. By guiding others to increase their energy they, in turn, have the vitality to live their purpose, to shine their light fully- and benefit all who cross their path. Dr Tufenkian has been treating chronic illness for two decades. A CFS sufferer herself she had no choice but to dig deep into the literature and uncover the root causes of CFS. Through her research and experience, she developed an effective road map for lasting change in her patients. Seeing them flourish after they had given up all hope. Many of these patients had seen many wonderful physicians but they did not know how to assess all the potential root causes of ME/CFS. Thus she realized she needed to create share her clinical wisdom with the wider medical community. Jenny Tufenkian ND is a licensed Naturopathic Physician who got her training and residency at National University of Natural Medicine (formerly NCNM). She went on to be a sought after adjunct clinical faculty member and ran her own successful private practice in Portland, Oregon. Dr. Jenny Tufenkian holds a BA in Political Sociology from the Evergreen State College. She loves to teach. She and has created on-line and in-person tools for practitioners and individuals who desire to live with more vitality. She is also a mom of two, happily married and loves her time outdoors and in the kitchen. What We Discuss In This Episode Jenny specializes in treating Chronic Fatigue Syndrome (CFS) - a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. CFS is also known as Myalgic Encephalomyelitis (ME). Many people with conditions like CFS/ME will tell you it goes well beyond burnout and exhaustion. Dr. Jenny has personal experience of struggling with this condition and shares her own journey. We talk about how western medicine views and treats this type of illness versus how the functional medicine and naturopathic doctors view and treat this illness. Since this is a very complex condition, Dr. Jenny shares the ONE Thing she feels our listeners can do to boost their energy no matter if they are really exhausted or feeling well. We discuss how and when we eat can impact our energy and what we can do – especially for those who are exhausted? Dr. Jenny also discusses some of the best ways for people to find the answers they need when they are struggling with chronic fatigue. Free Resources from Dr. Jenny Tufenkian LINK to QUIZ Why are you So Tired? Find your root cause! https://quiz.drjennytufenkian.com/sf/96d715b6 LINK to MASTERCLASS free training: https://event.webinarjam.com/register/1/pg43lhx Connect with Dr. Jenny Tufenkian: Website: drjennytufenkian.com FB/LinkedIn/ IG: @drjennytufenkian YouTube : Natural Healing with Dr Jenny ND Connect with Lynne: If you are looking for a community of like-minded women on a journey - just like you are - to improved health and wellness, overall balance, and increased confidence, check out Lynne's private community in The Energized & Healthy Women's Club. It's a supportive and collaborative community where the women in this group share tips and solutions for a healthy and holistic lifestyle. (Discussions include things like weight management, eliminating belly bloat, wrangling sugar gremlins, and overcoming fatigue, recipes, strategies, and much more so women can feel energized, healthy, confident, and joyful each day. Website: https://holistic-healthandwellness.com Facebook: https://www.facebook.com/holistichealthandwellnessllc The Energized Healthy Women's Club: https://www.facebook.com/groups/energized.healthy.women Instagram: https://www.instagram.com/lynnewadsworth Free Resource: Hot flashes? Low Energy? Difficulty with weight management? If MID-LIFE & MENOPAUSE are taking their toll then I've got a solution for you! I've taken all my very best strategies and solutions to help you feel energized, vibrant, lighter & healthy, and compiled them into this FREE resource! Thrive in midlife and beyond - download my guide here: https://holistic-healthandwellness.com/thrive-through-menopause/ Did You Enjoy The Podcast? If you enjoyed this episode please let us know! 5-star reviews for the Living Life Naturally podcast on Apple Podcasts, Spotify, Pandora, or Stitcher are greatly appreciated. This helps us reach more women struggling to live through midlife and beyond. Thank you. Together, we make a difference!
A day to bring awareness to Chronic Immunological and Neurological Diseases like Myalgic Encephalomyelitis(ME), Chronic Fatigue Syndrome(CFS), Fibromyalgia, Gulf War Syndrome, and Multiple Chemical Sensitivity(MCS). --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app
Having a chronic illness as a young adult can be isolating. Healthy peers don’t understand and the medical world feels designed for older people. Then one day, you find people like you online. These online communities weren’t always there – a few brave pioneers paved the way for these safe spaces to take flight. In this episode, Stefanie Grant and Jenny McGibbon discuss how they started sharing their health journeys online in their early 20s. For both Stefanie, who has facial pain disorders and Fibromyalgia, and Jenny, who has Myalgic Encephalomyelitis (ME) and Short Bowel Syndrome, their blogs began as a personal outlet during a time they felt alone in their health battles. As their journeys evolved, so did their blogs, becoming online communities that now serve thousands. Together, they discuss their responsibilities as leaders within the space, the delicate balance that exists between positivity and authenticity, and how they attempt to hold space for others while recognizing everyone has a different lived experience.
"Necessity is the birthplace of all creativity," says Ashok Gupta. He describes how his own chronic fatigue experience lead to the life-changing practices he now teaches others. He's dedicated his time to supporting people with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) and similar issues like fibromyalgia treatment. Listen in as he explains That while mainstream medicine is good at hardware problems, a lot of modern illnesses are more akin to software problems, Why our brain response needs reconditioning to address issues like fibromyalgia causes, chemical and mold sensitives, and other mysterious illnesses, and Some sample exercises listeners may use to recondition their own anxiety responses. Speaker, filmmaker, and health practitioner Ashok Gupta is Program Clinic Director with The Gupta Program. As an undergraduate at Cambridge University, he suffered a stomach bug that spiraled him into ME/CFS. It was "like a brick wall in front of him," he says, surrounded by professionals telling him there was nothing he could do to feel better and improve. After some research, he understood that there is an array of modern chronic conditions that are misunderstood, and mainstream medicine doesn't offer reliable solutions. He brought his research together and formed his own treatment program. Twenty years later and healthy, he's made it his work to effectively help others with ME/CFS and other similar issues like fibromyalgia exercises, chemical and mold sensitives, and MCAS. His program addresses what they call NICS: Neuro (has its birthplace in nervous system), Immune (aspects of immune system over-triggered), Conditioned (learnt action in brain as defensive response), and Syndrome (each patient has unique collection of symptoms). He likens the brain conditioning response in these modern illnesses to PTSD. An initial illness causes an over-reaction of the amygdala and this over-reaction is then triggered in other circumstances, activating the nervous and immune system. Their therapy involves teaching the brain that the body is no longer threatened, breaking the vicious cycle of the physiological response and reinforcements. Their main brain training technique is a seven-step technique with additional supporting methods. Lucky listeners can get a glimpse of his method as he takes listeners through a sample exercise called the "4S Technique." Listen in for peaceful and encouraging chronic illness motivation. For more about his program, see guptaprogram.com. Available on Apple Podcasts: apple.co/2Os0myK
Lisa Alioto is a U.S. lawyer who trained hard and climbed to the summit of Mt Kilimanjaro. Unwittingly to Lisa, conquering that incredible physical challenge would mentally prepare her for even bigger physical - and medical error - challenges. Years later and well into her law career, Lisa started to experience extreme exhaustion and sleeping symptoms that progressed to black outs, memory loss and vision loss. In an effort to find what was causing her debilitating symptoms, Lisa encountered a slew of uneducated physicians and misinformed physicians and careless physicians. Lisa was exposed to multiple medical errors - including a twisted version of cognitive behavior therapy , and so-called exercise therapy and both of which exacerbated her illness causing her to be more ill and disabled - Eventually Lisa received a proper diagnosis of a neuro-immune illness. Not one to sit back and let injustice continue, Lisa has taken her experiences with medical error, and advocates for other patients so they don’t have to go through the same medical harm and delayed diagnosis she did. Lisa tells the struggle she encountered with a medical system that has embedded a medical error into its education of doctors and treatment of patients. SHOW NOTES: Climbing Mt Kilimanjaro (Lisa is 3rd from right) 0:05:00 Lisa was born in Milwaukee - one older brother - moved around a lot in mid-West - parents married 50+ years - college in Minnesota then twin cities (Minneapolis–Saint Paul) for law degree - undergrad in psychology, criminology minor - thought she would be a police officer 0:06:15 Gradual onset of illness - started 2014 at age 43 - noticed getting more tired and exhuasted, harder to get to work - by 2015 was impacting work, took much more effort because so exhausted - sleep quality poor and declining - sought medical help 0:07:15 A lot of different kind of doctor visits - really frustrating - also expensive - now knows she has compromised immune system so getting sick a lot from doctor waiting rooms - but no body knew what to do - throwing out guesses as to what causing her illness, but some of the guesses were quite harmful - different meds - one medication was so strong - was given 8X dose of large man, subsequent doctors have tested Lisa for organ damage - also told to spend 12 hours a day outside and will be fine 0:08:30 An impossibility living in Minneapolis, not enough sunshine - also sent for cognitive behavior therapy - a top hospital told Lisa to exercise more, but she was very active before getting sick, an excercise buff - initially thought it was great idea, but it turned out it was the worst advice she received 0:09:30 Lisa was a mountain climber - 2005 / 06 decided to get into shape - started intense workouts - wanted to push further and wanted to climb Mt Kilimanjaro and summit it - one of her biggest accomplishments in many ways 0:10:45 Climbing was a real challenge - altitude and effort hard on the body - a migraine the day before the summit - an experience of a lifetime - now draws on that accomplishment to help deal with chronic illness and other life challenges To Chew or Not to Chew 0:12:45 When initially ill, Lisa thought she had a sleeping disorder because it was so poor and she was exhausted - went to a sleep clinic - but in 2016 more symptoms - memory loss, vision loss, swollen lymph nodes - health went down hill 0:14:00 No doctors in Minnesota for ME patients - so not getting any care - waiting for her appointment at the Stanford clinic - but Lisa's GP said that Lisa's symptoms were beyond her skills - so went to a lot of different specialists: rheumatology, infectious diseases, internal medicine, neurologist - but not finding any thing to explain symptoms - finally went to clinic that diagnosed her with Myalgic Encephalomyelitis (ME) - aka 'chronic fatigue syndrome' 0:15:30 Felt relief getting a diagnosis - but relief short lived until she did her own research on ME - learned about it and went to 3 day course to manage disease - but more research exposed that exercise and cognitive behavior therapy (CBT) were doing more harm than good 0:17:00 CBT reinforced that she should be progressing with exercise - but in the end, the only thing they helped with was with memory loss - working out caused relapses, so a short lived experience with that program 0:18:00 Difference between CBT Lisa experienced, and CBT people living with chronic illness receive - Lisa loved working out, but it would cause a relapse and bed bound for days - got to the point where Lisa would consider how much chewing was involved with certain foods because her energy was so limited - choosing oatmeal over sandwich 0:18:45 Hard for people who have never been seriously ill to understand having to choose food based on how much energy to chew the food - too much energy from chewing - lost a lot of weight because too tired to make food, chew food 0:21:00 Lisa did more research about ME - about misinformation, myths - but did get helpful information about not pushing herself physically - also experienced black outs, unresponsive for hours - like coming out of deep dark hole and hit by truck, feeling terrible - but has decreased somewhat since she stopped pushing herself Black Outs 0:22:15 Very scary having black outs - would hide her symptoms in public - but scared that someting bad could happen when she was blacked out 0:24:00 One turnaround in health was stopping exercise - but still had post exertional malaise (PEM) symptoms from doing too much when feeling 'good' - but next day would be crashed - learnig to pace her energy has been hard because she's a very motivated person - graduated top honors in law school, always tries to do her best at what she tries 0:25:30 Now when someone asks her to do something, Lisa has to look at how much energy she'll expend the day before the event, the day of the event, and if she has time to recover the day after the event - will it cause more harm than good? 0:26:30 "paying the price' of too much exertion means laying on the couch the next day - if lucky, she can open her eyes to watch tv - sleeping for 10 hours and laying on the couch all day to recover - eating is optional / minimal due to energy required - had to accept that self care is productive 0:28:30 Works from home every other day because of energy of taking shower and getting ready uses all her energy - putting on healthy face when sick takes a lot of energy too 0:29:30 'chronic fatigue syndrome' is a misnomer, so employers had to learn about - had to educate her employer - also involved in ME advocacy - some work with the Centre of Disease Control (CDC), health care providers - also volunteer for state ME org, doing social media - also formed Minnesota ME Alliance to support people in Minnesota - so many people are completely house or bed bound - want to find and help them and educate medical providers so people can get diagnosis and not waste time and money - also write a lot of articles about living with ME 0:32:45 Writing therapeutic - realized grieving for loss of acitve lifestyle, etc - used to do a lot for her parents, but now role reversal and parents are her care takers - example of grocery shopping because it takes energy to lift things, walk around store pushing cart, and unpacking at home Chronic Illness Made Lisa a Better Person 0:34:45 Grief and loss of losing life she had known - loss a lot of friends, shocking - but 2/3 gone once she couldn't be active, she lost friends - now feel have replaced a lot of those things - doing chair yoga with seniors, meditation - some positive things - may sound weird, but getting a chronic illness has made her a better person - because before was very motivated to mover herself forward, but now goals impact a lot of other people beyond herself 0:37:30 Engages a lot with chronic illness communities - so much campassion in these communities - brought out the best in her - more understanding 0:38:50 Biggest goal is pacing her energy to get better health - but hard time giving up advocacy and still trying to find balance with personal health - but had recent house fire threw a wrench into pacing - to help others, she needs to be healthy 0:40:40 Currently trying to get appointment at Stanford (Complex Care Clinic) so she can see a ME doctor - recently tried low dose naltrexone (LDN) and given her a small boost in energy - curcumin supplement may be helping but dealing with house fire aftermath so hard to tell - continue learning about potential new symptom treatment 0:42:30 Uses a sleep monitor and it shows she's not getting deep sleep - told she has 'spontaneous arousal' during sleep where she wakes briefly - but don't know cause - took meds to help with sleep, but caused more problems 0:44:20 Lisa will need to 'rest hard' after our interview - END Connect with Lisa Atiolo Twitter @lisaalioto Minnesota ME Alliance Blog - RealisticOptimism.org - focused on how you can live a life filled with happiness, gratitude and joy despite the challenges of a chronic illness. Facebook: https://www.facebook.com/RealisticOptimism/. Twitter @aliotolisa (Realistic Optimism) ____________________________________________ Host Scott Simpson https://remediescounseling.com
We all get tired of the whole dating game at times, but for people with Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME), it's a whole different level of exhaustion. CFS/ME can leave a person with a whole bunch of symptoms — physical exhaustion, mental exhaustion and muscle fatigue being just a few. Cat O Dowd, a sex therapist who lives with chronic fatigue syndrome, joins Nat to talk about navigating dating, relationships and sex around CFS/ME.
Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is characterized by many debilitating symptoms which include chronic pain. ME affects more than 560,000 Canadians, yet it remains a widely misunderstood and stigmatized illness.In the following episode, we attempt to break down some of these barriers by speaking with 4 people in pain who discuss their varied lived experiences with ME. We are also joined by Elizabeth Sanchez of the ME|FM Society of BC, who provides an overview of ME while discussing research priorities and other actions required to better support the needs of the many British Columbians affected by this illness.To learn more about the ME|FM Society of BC: https://www.mefm.bc.ca/Facebook support group for ME: https://www.facebook.com/groups/314293301959189/
US film director Jennifer Brea spoke to Amy about her Oscar-shortlisted documentary Unrest, which chronicles her experience and the experiences of others who have gone "missing" – the sufferers of the significantly debilitating illness Myalgic Encephalomyelitis (ME), aka "Chronic Fatigue Syndrome". Activist and ME sufferer Anna Kerr, Emerge CEO Dr Heidi Nicholls and Bio21 Institute researcher Dr Chris Armstrong then joined Amy to talk about the situation for Australians with ME, and the research being conducted to uncover the biological mechanisms behind it. Broadcast on 13 March 2018.
US film directorJennifer Breaspoke toAmyabout her Oscar-shortlisted documentaryUnrest,which chronicles her experience andthe experiences of others who have gone "missing" the sufferers of the significantly debilitating illness Myalgic Encephalomyelitis (ME), aka "Chronic Fatigue Syndrome". Activist and ME suffererAnna Kerr,EmergeCEODr Heidi NichollsandBio21 InstituteresearcherDrChris Armstrong thenjoinedAmyto talk about an upcoming screening ofUnrestat RMIT, the situation for Australians with ME, and the research being conducted to uncover the biological mechanisms behind it.
US film director Jennifer Brea spoke to Amy about her Oscar-shortlisted documentary Unrest, which chronicles her experience and the experiences of others who have gone "missing" the sufferers of the significantly debilitating illness Myalgic Encephalomyelitis (ME), aka "Chronic Fatigue Syndrome". Activist and ME sufferer Anna Kerr, Emerge CEO Dr Heidi Nicholls and Bio21 Institute researcher Dr Chris Armstrong then joined Amy to talk about an upcoming screening of Unrest at RMIT, the situation for Australians with ME, and the research being conducted to uncover the biological mechanisms behind it. New York Times journalist and author Jim Robbins came in to the studio to talk about his latest book, The Wonder of Birds and his upcoming talk at the Wheeler Centre. And Ben Eltham chatted about the latest in federal politics.
File on 4 investigates claims that parents whose children suffer from a crippling illness that leaves them sick and permanently exhausted have been falsely accused of child abuse. Parents of children with Myalgic Encephalomyelitis (ME) reveal how they have been investigated and referred for child protection measures on suspicion of a rare form of child abuse known as Fabricated or Induced Illness (FII). FII, also sometimes known as Munchausen's Syndrome by Proxy, is extremely rare and occurs when a parent or carer exaggerates or deliberately causes the symptoms of a child's illness. One charity says FII is being used inappropriately by education and health professionals. We talk to families who claim the stress caused by this accusation has made their children worse. With doctors divided over the best way to treat children, what's the impact on families? Reporter: Matthew Hill Producer: Nicola Dowling.
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