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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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- 2 weeks ago52 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
- Jun 13, 202658 min
#36 My daughter’s Long Covid changed how I practice medicine with Dr Binita Kane
STORIES: What do you do when your medical training has no answers for your own child? This is the question that Dr Binita Kane found herself facing in the aftermath of the Covid-19 pandemic. As a Consultant Respiratory Physician, Dr Kane was among the first clinicians to recognise that many patients were not recovering after acute Covid infection. Yet when her own daughter’s life was brought to a standstill by the debilitating effects of Long Covid, the challenge became deeply personal. Forced to confront the limitations of conventional medical knowledge, Dr Kane had to unlearn parts of her training and re-educate herself in order to help her daughter. That journey has since shaped the care she provides to the thousands of patients she now treats at The Long Covid Clinic, and the millions more who benefit from her advocacy and education work around Long Covid and complex chronic illness. In this episode, Dr Kane shares her daughter’s experience navigating Long Covid, the lessons it taught her as both a clinician and a parent, and how it transformed her approach to patient care. In our conversation, we explore: Managing complex chronic illness within a family context Why an interdisciplinary approach is essential for effective Long Covid care Why a strategy of complete rest, pacing and energy management is instrumental to recovery, and why it’s so difficult to get right The case for individualised, patient-led treatment approaches Dr Kane also explains how tools like Visible can help patients monitor heart rate, track stress and better understand their energy limits, and how this data can support more informed clinical decision-making. About Dr Binita Kane Dr Binita Kane is a Consultant Respiratory Physician, founder of The Long Covid Clinic, and a founding member of the International Society for Long Covid and Post-Acute Infection Syndromes (ISLC-PAIS). She is a leading advocate for evidence-based, patient-centred care for people living with Long Covid and related post-viral conditions: champion for Long COVID Kids, advisor for Long COVID Support and an Ambassador for #ThereForMe campaign. Dr Kane also hosts a YouTube channel entitled “The Long Covid Clinic: What you CAN do” to empower patients by sharing the extensive knowledge that she and colleagues have gained. Interested in taking part or sharing feedback on Make Visible? Please click here. Make Visible @visible.health podfeedback@makevisible.com
- May 29, 20261h 1m
#35 Vagus nerve stimulation for chronic illness and better health with Dr Elisabetta Burchi
SCIENCE: What if a small, non-invasive device could help regulate your nervous system, reduce inflammation, improve cognitive function, and support recovery from chronic illness? Dr Elisabetta Burchi, psychiatrist, entrepreneur, and Head of Research at Parasym, is helping advance the growing field of neuromodulation, using gentle electrical stimulation to influence the body's nervous system through the vagus nerve. Often described as the body's communication superhighway, the vagus nerve plays a key role in regulating heart rate, inflammation, mood, cognition, and overall resilience. Parasym has developed a transcutaneous vagus nerve stimulation (tVNS) device that stimulates the nerve through the tragus, a point on the outer ear, providing a non-invasive alternative to implanted technologies. Backed by more than 100 studies and clinical trials, vagus nerve stimulation has been investigated across a wide range of conditions, including Long Covid, ME/CFS, hypertension, depression, fatigue, anxiety and cognitive dysfunction, with promising results. Parasym has also explored how vagus nerve stimulation may enhance cognitive performance and mental clarity in healthy individuals, raising interesting questions about the future of health and human performance. In this episode, we explore: What the vagus nerve is and why it matters How vagus nerve stimulation works The science behind neuromodulation The difference between non-invasive ear stimulation and implanted devices How stimulation may affect heart rate variability (HRV), inflammation, and neuroplasticity What the evidence says about effectiveness, safety, and adherence The potential role of vagus nerve stimulation in both chronic illness and everyday health Whether you're interested in chronic illness, neuroscience, longevity, or optimising brain and body function, this conversation explores one of the most exciting and rapidly evolving areas of health science. View the glossary of terms here. Interested in taking part or sharing feedback on Make Visible? Please click here. Make Visible @visible.health podfeedback@makevisible.com
- May 15, 202655 min
#34 Fibromyalgia and chronic pain management with Ryan Bourdo, Physical Therapist
STRATEGIES: Physical rehabilitation for chronic pain conditions. If you live with fibromyalgia, ME/CFS, EDS or chronic pain, you've likely heard that exercise may help. You've also probably learned, the hard way, that the wrong kind of effort costs you for days afterwards. The truth is that thoughtfully-designed physical therapy strategies can help with quality of life, if the approach is individualised and built around a person's baseline. In this episode physical therapist **Ryan Bourdo** (Oregon Health and Science University, Portland), experienced in caring for people with these conditions, explains how his approach of individualised, patient-led therapy can improve patients' day-to-day lives. Ryan specialises in fibromyalgia, Ehlers-Danlos Syndrome (EDS), and their co-morbidities, and approaches each patient with time, empathy, and the willingness to listen. He explains how understanding his patient’s life, needs and pain points is the most instrumental part of him being able to help. We also hear from occupational therapist Amy Mooney, who brings over two decades of experience working with fibromyalgia, ME/CFS, Long Covid, EDS, MCAS, and Post-Exertional Malaise (PEM). Amy runs her own telehealth programme OT4ME and collaborates with the Bateman Horne Center to train healthcare professionals and support patients. Amy Mooney is an occupational therapist with over two decades experience providing care for individuals with conditions such as Fibromyalgia, ME/CFS, Long Covid, EDS, MCAS, with a particular focus on Post-Exertional Malaise (PEM). Amy runs her own telehealth programme OT4ME and collaborates extensively with the Bateman Horne Center to educate healthcare professionals and support patients. If you live with fibromyalgia or chronic pain, and want to how understand physical or occupational therapy might help, this episode is for you. In our conversation we explore: The role that simple movement can play in managing chronic pain Why physical therapy should not become an added burden for people already in pain. The importance of listening to patients with energy-limiting conditions How small, simple strategies can help patients see their condition as manageable Creating a low-stress environment What rest actually looks like — and why it's not the same as doing nothing How simplification can unlock the "golden nuggets" of everyday life Through both of these conversations, the same idea shines through - treat patients as individuals. Interested in taking part or sharing feedback on Make Visible? Please click here. Make Visible @visible.health
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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