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Make Visible: ME/CFS, Long Covid, POTS, EDS, Fibro & MCAS Explored: Daily Summaries Delivered
by Visible with Emily Kate Stephens
Shining a light on invisible illness. Emily Kate Stephens, journalist and Long Covid sufferer, discusses the latest research and insights with the world’s leading experts, scientists and healthcare professionals. Including ME/CFS, Long Covid, Ehlers Danlos (EDS), Fibromyalgia, POTS, Mast Cell Activation Syndrome (MCAS), Chronic Lyme, Infection Associated Chronic Conditions (IACCs) and more, we dive into the science of energy-limiting, chronic illness, whilst providing patients, caregivers and medical professionals with practical tools to diagnose, understand and manage their conditions. From pacing to supplements, repurposed drugs to biomarkers, therapies to advocacy groups, we share the work that is being done for and by the community, helping patients navigate their symptoms, emotions and lives.
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- 6 days ago1h 9m
#44 How to talk so your doctor will listen: patient advocacy for POTS, EDS, MCAS, ME/CFS and Long COVID, with Penny Parkes
Do your medical appointments leave you disappointed, frustrated, angry or traumatised? Do you come away without the diagnosis, referral or treatment you were hoping for? Here is the advice that could change your course. Penny Parkes is a long-time patient, writer, health-journalist and author of How to Talk So Your Doctor Will Listen. She lives with POTS (postural orthostatic tachycardia syndrome), EDS (Ehlers-Danlos syndrome), MCAS (mast cell activation syndrome) and other overlapping autonomic, autoimmune and vascular conditions. Drawing on decades of medical appointments for this multitude of overlapping chronic conditions and acute flares, Penny wrote this book as her legacy project: to distil all that she has learned to help you to get the best from your healthcare system. Full of practical, usable, advice Penny’s book is a reference guide for anyone navigating medical appointments. But it is particularly useful for those with complex chronic illness, including ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and Long Covid, guiding you through what to do, and what not to do, to get what you need from the few minutes you have. In this episode we discuss: Preparing for a medical appointment, including symptom data and knowing your own baseline Creating your “My Headlines” so your doctor hears your most important symptom first Building a partnership with your doctor and working as a team Medical misogyny, the gender health gap and drug dosing based on male bodies Diagnostic overshadowing, gaslighting and when symptoms are mistaken for anxiety Handling medical trauma with Penny’s RESPECT pathway At the heart of Penny’s strategy is creating an overview of your condition while understanding what you need right now, so you can focus on the most urgent problem in each appointment. Such down-to-earth, simple advice sets you up to feel empowered rather than overwhelmed as you navigate healthcare with POTS, EDS, MCAS, ME/CFS, Long COVID or any complex chronic illness. Penny also shares wonderful snippets of patient advocacy advice on her social media and now explores subject in more depth using her writing talents on her substack. How to Talk so Your Doctor Will Listen is available from these suppliers in the UK and internationally. It is also available on Audible. Interested in taking part or sharing feedback on Make Visible? Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health podfeedback@makevisible.com
- 3 weeks ago1h 2m
#43 Patient-focused care and practitioner education with Bateman Horne Center’s, Tahlia Ruschioni
Putting patients at the heart of chronic illness care and research whilst supporting and educating practitioners, to develop robust, proven pathways and positive outcomes for those with ME/CFS, Long Covid, Fibromyalgia, EDS and related conditions. Tahlia Ruschioni is Executive Director at the Bateman Horne Center (BHC), a relatively small center with an incredibly powerful reach, who are bringing decades of complex chronic illness understanding to build a global network of practitioners to support complex needs. Rooted in a deep history of treating ME/CFS, BHC has used that understanding to reach a far wider population. As Education Director, Tahlia developed multiple programmes and a global model for clinician education and training in post-infectious illness care. Through its Medical Education Resource Center (MERC), BHC has now reached over 13,000 healthcare professionals across all 50 U.S. states and 90 countries. Tahlia led the development of BHC’s Clinical Care Guide, giving clinicians a framework for treating ME/CFS, Long COVID, dysautonomia and mast cell activation using proven knowledge, existing licensed medications and well-understood techniques. Drawing on decades of expertise from some of Visible’s favourite clinicians, including Dr Lucinda Bateman, Melanie Hoppers and Amy Mooney, it is practical, thoughtful and an incredible resource for patients to take to their own clinicians. Tahlia has also overseen a wealth of videos and printable resources, including What is ME/CFS?, What is Orthostatic Intolerance?, and Overcoming Barriers to Access Care, for patients, carers and the wider community. The Life with a Low Battery: Living with ME/CFS that is referenced in the conversation shows how carefully BHC considers patients’ different sensory needs. In this episode we discuss: How Tahlia’s family’s experience of ME/CFS led her to the Bateman Horne Center Why BHC trains every provider to meet patients with respect, curiosity and time BHC’s multimodal approach to medical education Why lived-experience shapes every resource the BHC produces Writing ME/CFS standards of care into medical licensing How Long COVID has opened doors for ME/CFS research The importance of consistent definitions for e.g. post-exertional malaise (PEM) Why funding and care must support the whole patient, including living costs, medication access and help at home BHC’s work with Federation of State Medical Boards, alongside its ever-expanding practitioner training, has the potential to change medical education for ME/CFS and Long COVID at a systems level. BHC packs more punch than most organisations its size. If you’d like to support its work, please consider donating here. Interested in taking part or sharing feedback on Make Visible? Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health podfeedback@makevisible.com
- Oct 1, 20261h 4m
#42 Uniting the field to move faster together with Complex Disorders Alliance's Amy Rochlin
Bringing together research across Long Covid, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS) and other co-morbid conditions heralding faster, patient-specific treatment. Amy Rochlin’s mission stems from deeply personal understanding, but is driven by exceptional business sense. As the CEO of The Complex Disorders Alliance (CODA), she is pushing to scale funding, research and treatments for patients. When her daughter became chronically sick overnight, at the age of 16, Amy was forced to learn about complex chronic disorders. Shocked at the lack of effective help, she was inspired to turn her career in financial services and disease research to make a difference for patients like her daughter, joining founder Fidji Simo to lead CODA. CODA’s strategy hinges on the collaboration of the most prominent minds and organisations in the field, with the aim of helping patients as quickly as possible. The operation is laser-focused on listening to the patient and validating their experience, whilst turning to precision medicine and AI to escalate funding, enhance research opportunity and drive change. In this episode we discuss: How CODA unites leading scientists, clinicians, charities and pharma to move faster together Why subtyping and precision medicine could mean the right treatment for the right patient CODA’s neuro-immune research portfolio Leading new research into craniocervical dysfunction (CCD) Collaborations in genomics, microclots, immune dysfunction and vagus nerve stimulation research Why patients belong at the heart of research If you live with Long Covid, ME/CFS, POTS, EDS or another complex chronic illness, and wonder whether anyone is joining the dots, this episode shows that serious people, serious science and serious investment are coming together on your behalf. By bringing together the research understandings and expert minds of people including Mikki Tal, Nancy Klimas, Resia Pretorius and Kevin Tracey, and organisations such as PrecisionLife, the OMF, and Schmidt Initiative for Long Covid, CODA creates a collaborative that crosses specialties and conditions to move towards treatment options at greater speed. Interested in taking part or sharing feedback on Make Visible? Please click here. Make Visible @visible.health podfeedback@makevisible.com
- Sep 7, 202652 min
#41 Cracking the genetic code of complex chronic illness with Steve Gardiner, PrecisionLife
PrecisionLife are cracking the genetic code in complex chronic illness with their latest research in ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and Long Covid. Through large-scale studies in with DecodeME, the LOCOME Project, Sano Genetics' Gold dataset, and the All of Us research programme, they have identified hundreds of genes associated with Long COVID and ME/CFS. They believe this genetic data reveals the different patient phenotypes within these conditions, and how each might be treated. This week, PrecisionLife's CEO Steve Gardner shares the work that they have been doing. He discusses why these findings mark a transformational point in our understanding, diagnosis, and treatment of complex chronic illness. He explains: What they have identified in the genetics of ME/CFS and Long COVID patients The implications of the genetic overlaps and differences between the two conditions Why stratification is essential in clinical trial design and treatment How this genetic understanding could shape targeted treatment The 42 repurposed drug candidates that they have identified so far Steve Gardner believes this work has created a profound shift in our understanding of ME/CFS, Long COVID and has potential across many complex chronic conditions. Collaborating with key organisations including the Complex Disorders Alliance (CODA), Action for ME, Innovate UK, and the Metrodora Institute, PrecisionLife is using precision medicine to individualise treatment and build new pipelines and pathways for ME/CFS and Long COVID patients. View PrecisionLife’s work into Long Covid and ME/CFS here. Complete the survey to register your interest in Post COVID DNA Wellness Report here. View the Patient Recap of the ISLC-PAIS Conference here. Interested in taking part or sharing feedback on Make Visible? Please click here. Make Visible @visible.health podfeedback@makevisible.com
- Aug 7, 20261h 4m
#40 Orthostatic Intolerance, pain, PEM & MCAS - connections in ME/CFS, Long Covid, EDS & Fibromyalgia
REVIEW: with Nancy Klimas, Peter Rowe, Lucinda Bateman, Todd Davenport & Theoharis Theoharides For decades, people living with ME/CFS, Long Covid, fibromyalgia, EDS and other complex chronic illnesses have faced too few answers. But research is giving us a clearer picture. As researchers uncover more about these conditions, we're beginning to see how the same underlying biological processes — from disrupted homeostasis to mast cell activation — can appear across very different diagnoses. For Episode 40 of Make Visible, we've revisited some of our most illuminating conversations from across the series, drawing on decades of scientific research and clinical experience to explore the recurring themes connecting these conditions. Our guests include: Nancy Klimas M.D. on disrupted homeostasis and why ME/CFS, Long Covid and related conditions often need to be approached across multiple body systems Peter Rowe M.D. on orthostatic intolerance, blood flow and the links between hypermobility, EDS and ME/CFS. Lucinda Bateman M.D. on chronic pain, overlapping conditions and the importance of identifying and treating comorbidities in in ME/CFS, Long Covid and fibromyalgia. Todd Davenport DPT on post-exertional malaise (PEM) and what exercise physiology research has revealed about the body’s response to exertion. Dr. Theoharis Theoharides on mast cell activation (MCAS) and the range of symptoms it may help explain. Emily Kate Stephens and Gez Medinger reflect on what this science means for people living with complex chronic illness. Together, these conversations paint a hopeful picture: as our understanding of ME/CFS, Long Covid, EDS, MCAS and related conditions grows, so too does our ability to manage symptoms and improve care. Nancy Klimas M.D. is Director of the Institute for Neuro-Immune Medicine at NSU, and a leading voice in translational research focused on chronic illness, Gulf War Syndrome, and Long Covid. With decades of experience in immunology and clinical science, Dr. Klimas is a champion for an integrative, personalized approach to patient care. Listen to the full interview in Episode 15. Peter Rowe M.D. is director of the chronic fatigue clinic at Johns Hopkins Children’s Center where he diagnoses and helps young people with ME/CFS, EDS, Long Covid and related disorders. Dr Rowe was the first to identify the cross-over of EDS, OI and ME/CFS in 1998 and is a leading voice for adolescents and young people with Ehlers Danlos Syndrome (EDS) and Fatigue-related conditions. Listen to the full interview in Episode 24. Lucinda Bateman, M.D. is founder and Chief Medical Officer of the Bateman Horne Center, Salt Lake City, whose mission is “improving access to informed health care for individuals with ME/CFS, Long COVID, and fibromyalgia by translating clinical expertise into medical education and research initiatives”. Dr. Bateman was one of the researchers responsible for the National Academy of Medicine’s 2015 report on ME/CFS. Listen to the full interview in Episode 5. Todd Davenport is Professor and Chair of the Doctor of Physical Therapy (DPT) Program at University of the Pacific. His clinical and academic interests as a physical therapist and exercise scientist revolve around complex chronic conditions (commonly preceded by an infection) such as ME/CFS (myalgic encephalomyelitis), chronic fatigue syndromes and Long Covid, working to understand the systems-level pathophysiology of post-exertional malaise. Listen to the full interview in <a href='https://pod.link/1767819213/episode/bWFkZXZpc2libGUucG9kYmVhbi5jb20vNTZlNmQ1OGItNDRiOC0zM2MzLTlmNjUtODJjNzkwM2M2
- Jul 24, 202652 min
#39 ME/CFS & EDS bedbound for 8 years - Learning to Live Again with Lizzie and Amy Mooney
STORIES: ME/CFS and EDS left Lizzie bedbound for eight years - a mother's fight for answers and a daughter's fight to reclaim independence. Lizzie Mooney became chronically sick with ME/CFS and Ehlers-Danlos syndrome (EDS) at just nine years old. By 11 years old she was bedbound. She would spend the next eight years in bed, unable to sit upright, and dependent on her mum, Amy Mooney, for almost everything. Now 21, Lizzie is slowly reemerging into the world she left behind. Building her independence, she has relearned to walk, started exploring her local area and has even started volunteering her time and skills. According to Amy, Lizzie has “moved mountains” to get where she is today, but it is the determination and spirit of them both that has changed Lizzie’s course. In this episode Lizzie joins her mother, Amy Mooney, an occupational therapist who became her full-time carer. Through trying to understand her daughter’s condition, Amy has become a respected leader in the complex chronic illness space, helping people manage their conditions and improve their quality of life, and educating other practitioners globally. Together, they reflect on navigating this experience as daughter and mother, patient and carer. They share the years spent searching for answers, the grief of losing childhood and independence, and the slow, complicated process of re-entering the world. In this episode, Lizzie and Amy discuss: Growing up with severe ME/CFS and EDS Spending eight years bedbound, including four years completely flat Losing childhood, education and independence to chronic illness How online friendships became a lifeline Tools to maintain a sense of self Relearning the outside world after years in bed Why contentment became more important than hope Interested in taking part or sharing feedback on Make Visible? Please click here. Make Visible @visible.health podfeedback@makevisible.com
- Jul 10, 202659 min
#38 Pacing is Power - POTS, PEM, EDS & MCAS Strategies with Dr Clayton Powers
STRATEGIES: Physical therapy tools to reduce crashes and improve quality of life for POTS, Post-Exertional Malaise (PEM), EDS, MCAS, and Infection-Associated Chronic Conditions like ME/CFS and Long Covid. Many patients are told that they have anxiety, depression, or just need to exercise, and that there is little that can be done for their symptoms. This week, Dr Clayton Powers, physical therapist and leading expert in complex chronic illness management, explains why patients should now be dismissed in this way, and what can be done to help. Dr Powers specializes in treating ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, and MCAS, and trains other healthcare providers to do the same. While he doesn't promise a cure, his "pacing, not pushing" approach helps patients achieve measurably shorter, less intense, and less frequent crashes: outcomes his patients consistently report over months of care. In this episode, we discuss: Why pacing remains one of the hardest skills for chronic illness patients to learn, and how to start The key difference between POTS and POTS with post-exertional malaise (PEM), and how Dr Powers assesses it Why standard graded exercise programs (like the CHOP/Levine Protocol) can worsen PEM symptoms Dr Powers' nervous system toolbox: cold therapy, compression boots, vibration devices, and supplemental oxygen Managing mast cell activation syndrome (MCAS) with physical therapy How wearables like Visible, and trained service dogs, can flag an impending crash before it fully hits Why "permission to rest" needs to be built into clinical care, not treated as an afterthought Dr Clayton Powers works with the Bateman Horne Center, is a contributor to many of their free resources including the Clinical Care Guide, Therapy for Patients with PEM series and Coffee with a Clinician series. He has contributed extensively to education and research, including a feasibility studies on wearables for POTS management and a systematic review on the impact of exercise on POTS. Interested in taking part or sharing feedback on Make Visible? Please click here. Make Visible @visible.health podfeedback@makevisible.com
- Jun 26, 202659 min
#37 ME/CFS breakthroughs: are treatments getting closer?
SCIENCE: Are ME/CFS research breakthroughs finally helping us understand the disease and move closer to treatments? ME/CFS has been underfunded and under-researched for decades. Despite the scale and severity of the illness, major gaps remain in diagnosis, clinical care and treatment options. Part of the challenge is scientific. ME/CFS is a complex, multi-system illness that can affect the immune system, nervous system, metabolism and energy production. There is still no single diagnostic biomarker, and people who are more severely affected are often left out of research because participation itself can be difficult or impossible. People with ME/CFS, advocates, clinicians and researchers have fought to move the field forward but progress has been frustratingly slow. Now, in the wake of Long Covid and growing recognition of infection associated conditions the needle may be finally shifting. In this episode we bring together leading voices in ME/CFS research, advocacy and clinical innovation to ask: what breakthroughs are changing our understanding of ME/CFS, and could they bring us closer to better diagnostics, treatment strategies and care? Across these conversations, several themes emerge: How Long Covid has brought funding, research infrastructure, and clinical attention to ME/CFS Why genetics research, including DecodeME and LOCOME studies are key milestones that could enable individualised treatment How precision medicine could enable personalised medicine How collaboration between organisations is accelerating progress Why a major gap remains between research momentum and the reality of patient care today Dr Vicky Whittemore is programme director of the NINDs at the NIH, overseeing the ME/CFS grant portfolio. She has brought her decades of expertise to identify infrastructure gaps (biobanks, training, data sharing), and produce a full research roadmap focused not on describing ME/CFS but on getting treatments into clinical trials and to the patients. Amy Rochlin is CEO of the Complex Disorders Alliance (CODA), a patient-founded non-profit organisation accelerating groundbreaking research, clinical innovation, and patient-centred solutions for complex disorders. Through collaborations with industry and clinical leaders they are pushing to develop diagnostic tools and targeted therapies through collaboration and precision medicine at scale. They have recently announced a multi-system research model for complex disease. Sonya Chowdhury, CEO of Action for ME has seen a palpable shift over her 14 years tenure, position the non-profit at the forefront of the joining patient experience with science. Co-lead of the DecodeME study (alongside the University of Edinbugh), Action for ME has evolved to be a driving force of the research, building the Genetics Centre for Excellence, identifying patients’ top 10+ research priorities, and giving focus to PEM in their PRIME workshops. Dr Steve Gardner, CEO and co-founder of PrecisionLife has built on the incredible work of Decode ME and the wealth of patient data to build clear understanding of the genes involved in ME/CFS. Their work has identified 260 associated gene
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About Make Visible: ME/CFS, Long Covid, POTS, EDS, Fibro & MCAS Explored
Shining a light on invisible illness. Emily Kate Stephens, journalist and Long Covid sufferer, discusses the latest research and insights with the world’s leading experts, scientists and healthcare professionals. Including ME/CFS, Long Covid, Ehlers Danlos (EDS), Fibromyalgia, POTS, Mast Cell Activation Syndrome (MCAS), Chronic Lyme, Infection Associated Chronic Conditions (IACCs) and more, we dive into the science of energy-limiting, chronic illness, whilst providing patients, caregivers and medical professionals with practical tools to diagnose, understand and manage their conditions. From pacing to supplements, repurposed drugs to biomarkers, therapies to advocacy groups, we share the work that is being done for and by the community, helping patients navigate their symptoms, emotions and lives.
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