Make Visible: ME/CFS, Long Covid, POTS, EDS, Fibro & MCAS Explored

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 Episode 26.
Dr. Theoharis Theoharides is Executive Director, Center of Excellence for Neuroinflammation Research (CENIR) & Professor, Institute for Neuro-Immune Medicine at Nova Southeastern University. Theoharides, ‘The Mast Cell Master’ is Adjunct Professor of Immunology, at Tufts School of Medicine where he was Professor and Director of Molecular Immunopharmacology & Drug Discovery and has been at the forefront of mast cell research for over 30 years.
Listen to the full interview in Episode 13.
 
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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
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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 such as ME/CFS and Long Covid.
Many patients are told that they have anxiety or depression, or they just need to exercise, and that there is little that can be done to help their symptoms.  In this episode, Dr Clayton Powers, physical therapist and leading expert in complex chronic illness management, explains why patients should not 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.  These are 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
How physical therapy can support people with mast cell activation syndrome (MCAS)
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, rather than 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.
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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.
Tahlia Ruschioni is the Executive Director of the Bateman Horne Center, where she has led the transformative growth of the Medical Education Resource Center (MERC) as a global model for clinician education and training in post-infectious disease care, reaching more than 13,000 healthcare professionals across 90 countries and 46 U.S. states, offering accredited medical education in the clinical management of complex, multisystem illnesses. She led the development and launch of the BHC  Clinical Care Guide which provides an actionable roadmap for clinicians of ME/CFS, Long Covid and Infection-Associated Chronic Conditions.
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 genes which has lead to 42 drug repurposing candidates, and the potential to finally offer the stratification and individualise treatment that the community has been needing.
David Tuller is a senior fellow in public health and journalism at UC Berkeley's Center for Global Public Health who has been investigating scientific, methodological and ethical problems within ME/CFS since finding errors in the 2011 PACE trial.  His advocacy work, documented in his ongoing series Trial By Error, was an important voice in finally overturning the NICE guidelines of treating ME/CFS with their admission of Graded Exercise Therapy being harmful and Cognitive Behavioural Therapy not curative.
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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.
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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.
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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.
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STORIES: Undiagnosed Hypermobile Ehlers-Danlos Syndrome (hEDS) | Chronic Pain, Diagnosis & Living with Complex Chronic Illness
For 23 years, Dr Lucy Foulkes has lived with chronic pain, migraines, endometriosis, joint hypermobility, and a cycle of unexplained symptoms. She was seen by neurologists, rheumatologists, urologists, gynaecologists, physiotherapists, and nutritionists. Nobody connected the dots. Then last year, a stranger's Instagram message changed everything, and finally led her to a diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS).
In this episode of Make Visible, Dr Foulkes brings a uniquely powerful dual perspective: an Oxford psychologist who researches diagnosis, self-diagnosis, and mental health language, and a patient who spent over two decades undiagnosed.
If you are living with unexplained chronic pain, fatigue, migraines, MCAS, POTS, endometriosis, hypermobility, or you have ever been told that your symptoms don't add up, this episode is for you.
In this episode we cover:
The siloed medical system that treats symptoms in isolation, and why it consistently fails complex chronic illness patients
Dr Foulkes' 23-year diagnostic journey through hEDS, chronic migraine, endometriosis, and more
The Beighton Scale and how hEDS and Hypermobility Spectrum Disorder (HSD) are assessed, and the potential change in diagnostic criteria in late 2026
The mental load of living with chronic illness: rationing medication, energy, and life itself
Self-diagnosis in chronic illness and mental health: danger or necessity?
Why diagnosis can feel like relief, not a sentence
Practical strategies for living well within the limits of chronic illness
Identity versus illness: how not to let your condition become who you are
About Lucy Foulkes
Lucy Foulkes is a Research Fellow in Psychology at the University of Oxford, specialising in adolescent mental health and social development. She is the author of Coming of Age: How Adolescence Shapes Us (2024) and What Mental Illness Really Is… And What It Isn't (2021). Her essay ‘Welcome To My Body’ is available to read here.
 
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SCIENCE: Long Covid | ME/CFS | Neuroinflammation | Clinical Trials
What happens to the brain when a virus takes hold and why do some people never fully recover?
Dr Avindra Nath has spent his career at the intersection of neurology and infectious disease, from the early AIDS pandemic through Zika and Ebola to today's work on Long COVID and ME/CFS. As Clinical Director of the NIH's National Institute of Neurological Disorders and Stroke (NINDS), he is leading some of the most important research into post-viral illness happening anywhere in the world.
In this episode, Dr. Nath explains the neuroscience of viral infection in accessible terms: how viruses enter and adapt inside the brain, how a single infected cell can trigger widespread neurological dysfunction, and why viral remnants (fragments of protein and RNA that linger long after the acute infection) may be enough on their own to cause ongoing damage.
He shares the key findings from the NIH's landmark 2024 deep-phenotyping study of post-infectious ME/CFS patients, including:
Persistent immune activation and immune exhaustion, even years after infection
Striking sex differences in immune response: B cell activation dominant in men, T cell activation in women. with major implications for treatment
Why cohort selection and subtyping matter when designing therapies
Why a one-size-fits-all treatment approach will not work
Dr. Nath also addresses the controversy around the term "altered effort preference" used in the 2024 paper (a phrase that drew significant criticism from the patient community) and the NIH symposium convened in response.
Looking ahead, he outlines three active NIH trials that could reshape Long Covid treatment:
Viral Reservoir Study: multi-site biopsies to locate viral remnants throughout the body
IVIG Study: placebo-controlled crossover trial using immunotherapy
Checkpoint Inhibitor Study: using pembrolizumab to reverse immune exhaustion; FDA-approved, with enrolment opening the week of 20th April 2026
Emily Kate and Gez break down the science, highlight the findings most relevant to the Long Covid and ME/CFS communities, and discuss some of the criticisms of the NIH team's methodology.
Dr Avindra Nath is Clinical Director of the NIH NINDS, Director of the Translational Neuroscience Center, and Chief of the Section of Infections of the Nervous System.
If this episode helped you: subscribe, leave a review, and share with someone navigating Long COVID or ME/CFS.
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STRATEGIES: Understanding Postural Orthostatic Tachycardia Syndrome (POTS) - Practical Strategies for Diagnosis and Treatment
“80- 90% of POTS patients are disabled to a certain extent - people who just cannot work or go to school or are limited in their daily function.”
— Dr Tae Chung, POTS Program Director, Johns Hopkins University
Postural Orthostatic Tachycardia Syndrome (POTS) is a complex condition linked to dysfunction of the autonomic nervous system. Primarily characterised by an abnormal increase in heart rate when moving from lying down to standing (orthostatic tachycardia), POTS patients experience a wide variety of debilitating symptoms including:
Brain fog and cognitive dysfunction
Dizziness and lightheadedness
Nausea and digestive issues
Fatigue
Temperature regulation problems
In this week’s episode Dr Tae Chung explains the diagnostic criteria for POTS, including orthostatic tachycardia, and the challenges of diagnosing and treating POTS, especially when alongside other co-morbid conditions. We discuss the standard treatments for POTS of this often misdiagnosed or mistreated condition, and why personalised care is essential for effective POTS management.
Dr Chung also shares insights from his ongoing research into Long COVID-related POTS, including investigating biomarkers to better understand the condition; exploring drug therapies and non-pharmacological treatment; his work on the RECOVER clinical trial; and research into safe exercise approaches for POTS patients (with Prof. Todd Davenport).
And Emily Kate Stephens and Gez Medinger discuss practical, real-world strategies for those suffering from POTS symptoms:
How to seek a POTS diagnosis
The 10 minute active standard test / NASA lean test
Lifestyle interventions: hydration, salt intake, and diet
The challenge of exercise of exercise and pacing
Trusted resources and support for POTS patients
Dr Tae Chung is the Director of the POTS Program and Assistant Professor in Physical Medicine and Rehabilitation at Johns Hopkins University.  A board certified neuromuscular specialist and physiatrist, his primary areas of patient care and research are autonomic nervous system dysfunction.
Resources:
POTS UK - Managing POTS 
Top Tips for Obtaining a Diagnosis 
Physical activity and exercise in ME/CFS – NICE guidelines 2021 
Standing up to POTS - Daily Management Strategies
POTS Foundation Australia - Living with POTS 
 
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