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

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.

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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.

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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 Usresearch 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 CEOSteve 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.

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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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STRATEGIES: How do you navigate medical appointments when you’re living with a complex chronic illness?

Too often, patients with energy-limiting conditions are told there’s “nothing to be done.” Many are dismissed as anxious, not believed, and left without the care they need, across healthcare systems worldwide.

In this episode, we push back against that narrative.

We’re joined by Dr. Alba Azola, rehabilitation physician and lead of the ME/CFS and related disorders program at Johns Hopkins University. Through her work, she has helped many patients with complex chronic illnesses regain function and reduce symptoms, challenging the belief that these conditions are untreatable.

Dr. Azola shares a hopeful, practical approach: one that focuses on managing symptoms, addressing co-morbidities, and using targeted strategies to reduce pain and improve daily function.

She also discusses the importance of spreading knowledge from experienced, compassionate clinicians, and how this can begin to shift the medical landscape. As part of a multidisciplinary team, she contributed to the PM&R Compendium Statement, a clinical guide supporting physicians in treating Long Covid and related conditions, including POTS, MCAS, dysautonomia, cognitive dysfunction, and orthostatic intolerance.

Hosts Gez Medinger and Emily Kate Stephens break down key insights from the PM&R Compendium Statement, alongside guidance from the Bateman Horne Clinical Care Guide and other leading resources, offering a more structured approach to care.

In this conversation, they explore:

• How to access the medical care you need
• How to prepare effectively for appointments
• The value of keeping a symptom diary
• Communicating with your GP or primary care physician
• Using pacing strategies and data tools (like Visible)
• Building confidence in self-advocacy
• Understanding the treatment you deserve

Resources & References:

PM&R Compendium Statement

Bateman Horne Clinical Care Guide

PNAS Patient Survey

DHS ME/CFS Delivery Plan

NICE Clinical Knowledge Summary ME/CFS

NICE Rapid Guideline for Managing Long Covid

Royal College of GPs Long Covid Advice and Resources for Long Covid

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SCIENCE: Long Covid awareness, understanding and research.

Long Covid Awareness Day (15th March 2026) marks six years since the COVID-19 pandemic unleashed its long tail of Long Covid on millions around the world.

In this week’s episode Emily Kate Stephens and Gez Medinger review the science and progress that has been made over the past six years in our understanding of this complex chronic condition.

Through interviews with some of the most prominent experts in the Long Covid and complex chronic illness field: Dr Avindra Nath, Dr Binita Kane, Joseph Breen PhD, Professor Mark Faghy and Dr Alba Azola, Emily Kate and Gez examine the medical, scientific and political landscapes and ask:

• What have we learned over the last six years?
• What are the current leading theories on what drives the condition?
• What are the approved treatment strategies?
• What are the latest and most exciting scientific studies that could have impact for those living with the disease?

Including personal reflections as Emily Kate and Gez approach their six year anniversary of contracting COVID-19 for the first time, they provide an overview of the condition and research landscape to assess how far we have come and the work still to be done.

About the experts

Avindra Nathis the Clinical Director of National Institute of Neurological Disorders and Stroke (NINDS) at the NIH in the United States. A neuroimmunologist specialising in the impact of viruses on the brain, he led the Deep Phenotyping of ME/CFS Study which investigated the biological mechanisms of post-infection ME/CFS and chronic fatigue syndrome.

Binita Kane is a Consultant Respiratory Physician and founder of The Long Covid Clinic. After working on the front line in the NHS during the COVID-19 pandemic and supporting her daughter through Long Covid, she became a leading advocate, collaborating with organisations including Long Covid Kids, Long Covid Support, and #ThereForME, and advising parliamentary committees.

Joseph Breen is Section Chief for Adaptive Immunity specialising in Long Covid and ME/CFS at the National Institute of Allergy and Infectious Diseases (NIAID) at the NIH. He co-chairs RECOVER TLC workshops and contributes to the Trans-NIH ME/CFS Working Group.

Mark Faghy is Professor of Clinical Exercise Physiology at Loughborough University, specialising in respiratory physiology, rehabilitation, and Long Covid recovery. He contributes to multiple global initiatives including the World Health Network Long Covid Advisory Group, Long Covid Physio, and Long Covid SOS.

Alba Azola is a rehabilitation physician at Johns Hopkins University and leads the ME/CFS and Related Disorders Program. She is also a lead author of the Multidisciplinary collaborative guidance on the assessment and treatment of patients with Long COVID, helping clinicians develop evidence-based care pathways.

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STORIES: Oonagh Cousins - Olympic Hopeful to Long Covid Advocate

When professional rower Oonagh Cousins was pre-selected for the Tokyo 2020 Olympic Games, her dream was within reach. But when COVID-19 swept through the British rowing team, Oonagh didn’t recover like most others. Instead, she developed Long Covid, post-exertional malaise (PEM), and dysautonomia, forcing her from peak performance into chronic illness.

In this Olympic special episode, Oonagh joins Emily Kate Stephens and Gez Medinger to share her deeply personal story: from elite athlete and Olympic selection to Long Covid and ME/CFS advocate.

After university, Oonagh committed fully to professional rowing, training relentlessly, sacrificing socially, and pushing her body to its limits to represent Great Britain. But the very mindset that made her an Olympic contender — resilience, discipline, pushing through — ultimately pushed her into Long Covid.

As fatigue, brain fog and post-exertional malaise took hold, Oonagh was forced to confront the physical and emotional cost of training to be an elite athlete.

In this episode we explore:

• Long Covid in elite athletes
• Post-exertional malaise (PEM) and overtraining
• Why “pushing through” can worsen chronic illness
• The psychological impact of losing an Olympic dream
• Dysautonomia and recovery after COVID-19
• The grief cycle of chronic illness
• The advocacy gap in Long Covid and ME/CFS
• Finding renewed purpose beyond elite sport

Oonagh now works in Long Covid and ME/CFS advocacy, supporting patients through Long Covid Support and #ThereForME. She has contributed to scientific research, including Creating a Social Science Research Agenda for Long Covid, and is Comms and Policy Lead at Visible Health, bringing her lived experience to help build empathetic, patient-centered tools for living well with chronic illness.

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Sleep strategies for Long Covid, insomnia, and chronic illness

When you’re living with a complex chronic condition like Long Covid, sleep can feel like the one thing your body needs most… and the one thing you can’t access. Whether you struggle with insomnia, restless legs, sleep anxiety, constant waking or crushing fatigue, this conversation offers strategies to help.

In this week’s episode of Make Visible, Emily Kate Stephens and Gez Medinger discuss how sleep has affected and been effected by their Long Covid and chronic illness, and delve into the practical strategies to try and improve sleep quality and quantity.

Emily Kate is joined by sleep and respiratory physician David Joffe, who shares the strategies that he employs with his patients to try and help them with a wide range of sleep conditions, including Long Covid-related sleep disorders. Together, they explore why Long Covid so often disrupts sleep architecture, how reduced slow-wave sleep affects brain detoxification via the glymphatic system, and what the body truly needs to initiate and maintain restorative rest. Based on his 40 years of experience working with patients with severe sleep and respiratory disorders and Long Covid-related complications, David Joffe shares evidence-based insights on:

•

Sleep hygiene for Long Covid and chronic illness

•

Daily routines to support circadian rhythm and sleep quality

•

Calming nighttime rituals to reduce sleep anxiety

•

Supplements for sleep and nervous system regulation

•

Pharmacological supports, including melatonin, magnesium, and glycine

And Emily Kate and Gez break down the interview, talking about their personal experience of the strategies discussed, looking in more detail at some of the supplements, and sharing their thoughts on what has or hasn’t worked to aid with their sleep, once again proving the need for a personalised approach when working with patients whose nervous systems, metabolisms, and brains are in a highly dysregulated state.

David Joffe is senior staff physician at the Royal North Shore Hospital, Sydney where he has specialist interests in Long Covid–related sleep disorders, insomnia, restless legs, non-invasive ventilation (NIV) and sleep apnea. He is the Vice Chair of the World Health Networks Long Covid Advisory Group. World Health Network aim to provide governments and healthcare systems with a wake up call on the urgency with which Long Covid needs to be addressed, sharing research and resources.

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Why can exercise cause post-exertional malaise (PEM) in complex chronic illnesses like ME/CFS and Long Covid, and how do we avoid the crashes?

If you experience a crash after a period of exertion, if traditional methods of ‘increasing fitness’ actually leave you with terrible side effects, this podcast is for you.

In this episode of Make Visible, physiotherapist and exercise scientist Todd Davenport joins Emily Kate Stephens to delve into the complex relationship between exercise, energy systems, and PEM in conditions like ME/CFS and Long Covid.

Davenport explains why traditional exercise approaches can actually be harmful for people with PEM, which he prefers to term post-exertional symptom exacerbation (PESE) or post-exertional neuroimmune exhaustion (PENE) to more accurately describe this hallmark symptom. He discusses how tools like the two-day cardiopulmonary exercise test (CPET) show impairments in oxygen use and energy production, and he talks us through how keeping the body below “ventilatory anaerobic threshold” using heart rate monitoring, pacing, and individualized activity management can slowly improve symptom burden and baseline – without triggering crashes.

This conversation challenges long-held assumptions about deconditioning and offers a nuanced, physiology-informed, individualized approach to care, that patients can manage themselves.

Topics include:

• Why exercise can worsen symptoms in ME/CFS and Long Covid
• What two-day CPET reveals about oxygen use and metabolism
• Is it post-exertional malaise or deconditioning?
• Using heart rate monitors for pacing
• Differences between ME/CFS, Long Covid, and POTS

And Emily Kate is once again joined by Gez Medinger to break down the ideas presented by this week’s guest, relating it to their own experiences of living with energy limiting conditions.

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 /post-exertional neuroimmune exhaustion.

Explainers:

Anaerobic Ventilatory Threshold

CPET testing

Oxidative phosphorylation

Mitochondrial Impairment

Neuroimmune Exhaustion

You can find guidelines for pacing with a heart rate monitor to minimize PEM in ME/CFS and Long Covid here.

Further reading / referenced studies:

ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day CPET (pre-print)

Physical therapy management of POTS using a pacing approach: a case report

Cardiopulmonary responses to exercise in ME/CFS: A case study

Altered effort and deconditioning are not valid explanations of ME/CFS

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Welcome back to Make Visible.

For those living with chronic illness or invisible illness, the New Year rarely brings a “new you” — and that can be especially hard after the emotional and physical demands of the holiday season. If you’re navigating ME/CFS, Long Covid, Fibromyalgia, Ehlers-Danlos Syndrome (EDS), POTS, Chronic Lyme, or another energy-limiting condition, please know that you are not alone: Make Visible is back with new ideas, new guests, and a familiar line up of empathy, exploration and a little humour.

Journalist and host Emily Kate Stephens is joined once again by Gez Medinger, investigative science journalist, patient advocate, and co-author of The Long Covid Handbook, for an honest conversation about living with complex chronic illness, managing post-holiday overwhelm, and finding gentler ways forward.

Together, Emily Kate and Gez explore the emotional toll of the holidays with chronic illness — from expectations and guilt, to isolation and burnout — and share personal strategies that have helped them cope, regulate their nervous systems, and release stored stress and trauma.

In this episode, they discuss:

• EMDR therapy and Gez’s personal experience using it for Long Covid and trauma
• The importance of processing emotions
• Breathwork and nervous system regulation as tools for symptom support
• Finding acceptance, releasing comparison, and celebrating small wins

This conversation blends lived experience, practical tools, and emerging science, offering validation, reassurance, and hope to anyone navigating life with chronic illness.

Go gently into the New Year, good people. Share this with someone who needs to feel seen - together, we can make small differences.

Gez Medinger is an investigative science journalist, filmmaker, and Long Covid patient advocate. He is co-author of The Long Covid Handbook (with Prof. Danny Altmann) and the creator of a YouTube channel with over 7 million views, featuring interviews with world-leading clinicians. He has conducted over a dozen patient-led studies, and his work has been featured in The New York Times, New Scientist, and Men’s Health.

Gez previously joined Make Visible on Episode 21.

Emily Kate Stephens is a broadcast journalist and breathwork practitioner. As a television news producer when she became sick with Long Covid in 2020, she turned her expertise to interviewing the leading experts in infection-associated chronic conditions. She is passionate about sharing knowledge and revels in connecting the work of practitioners across multiple disciplines, and sharing her lived experience to support patients and deepen understanding.

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Dr Peter Rowe is a leading voice for adolescents and young people with Ehlers Danlos Syndrome (EDS) and Fatigue-related conditions. An expert in orthostatic intolerance (OI), which is prevalent in nearly 100% of his patients, he believes that these conditions are treatable and he can move patients from bed-bound to regaining a decent quality of life using existing techniques.

He 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 his pioneering work has led many first documentations and a prolific amount of research in the field ever-since. Referred to as a pioneering puzzle-solver, Dr Rowe brings the knowledge that he has developed over the past 30 years to tireless, continued research and daily treatment of young patients.

In this week’s episode, recorded in-person at John Hopkins School of Medicine, he tells us “history is key”. At each appointment, he talks through the history of his patient’s symptoms with them and their families, and applies his historic knowledge to treating them with tried and tested techniques. He breaks down their conditions into it component parts, and treats each with approved drugs and lifestyle strategies, changing the lives of individuals and their families.

His work looking at the overlap of these conditions is vast. He strives to treat, educate and share his knowledge from his decades of experience. From the point at which he identified the relationship between EDS, OI and ME/CFS the work he produces today identifying the overlaps and opportunities to arise from comparing ME/CFS and Long Covid, Dr Rowe continues to strive to break down these conditions to help patients and healthcare professionals manage them and improve outcomes.

Dr Rowe is on the Research Advisory Council of SOLVE ME/CFS Initiative.

He has a superb series of webinars for MEAction to help with the diagnosis and treatment of these related conditions.

His book “Living Well with Orthostatic Intolerance” is available here. And use the code “HTWN” for a 30% discount.

Additional cited studies:

Brachial Plexus Study

Cerebral Blood Flow Study

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