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

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.

Join us every two weeks.

To find out more about the work that Visible is doing, using wearable technology to measure and manage complex chronic illness, visit our website at:

Make Visible

@visible.health

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20 episodes
Updated July 24

Episodes20

Newest first

July 24 · 52 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
July 10 · 59 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 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. Interested in taking part or sharing feedback on Make Visible? Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health podfeedback@makevisible.com
June 26 · 59 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 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. Interested in taking part or sharing feedback on Make Visible? Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health podfeedback@makevisible.com
June 13 · 58 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. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health podfeedback@makevisible.com
May 29 · 1 hr 1 min
#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. Find it easier to read than listen? Download the transcript here. Interested in taking part or sharing feedback on Make Visible? Please click here. Make Visible @visible.health podfeedback@makevisible.com
May 15 · 55 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. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health podfeedback@makevisible.com
May 1 · 1 hr 13 min
#33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes
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. Interested in taking part or sharing feedback on Make Visible? Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health
April 24 · 57 min
#32 Hidden Virus, Immune Exhaustion & the Brain: Long Covid, ME/CFS and post-viral illness with Dr Avindra Nath (NIH)
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. Share your story or send your feedback here. Download the transcript here. Make Visible @visible.health
April 3 · 57 min
#31 POTS: Symptoms, understanding, and management with Dr Tae Chung
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 Interested in taking part or sharing feedback on Make Visible? Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health
March 20 · 52 min
#30 Navigating medical appointments with Dr Alba Azola
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 Make Visible @visible.health
March 6 · 1 hr 5 min
#29 Long Covid: what has six years taught us?
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 Nath is 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. Make Visible @visible.health
February 20 · 53 min
#28 From Olympic hopeful to Long Covid: Oonagh Cousins’ story
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. Make Visible @visible.health
February 6 · 59 min
#27 Unlocking the strategies for deep sleep with David Joffe
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. Make Visible @visible.health
January 23 · 1 hr 1 min
#26 The truth about exercise & pacing in ME/CFS, Long Covid & POTS with Todd Davenport
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 Make Visible @visible.health
January 9 · 42 min
#25 You are not alone: navigating post-holiday fatigue, grief and acceptance in chronic illness. Gez Medinger & Emily Kate Stephens
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. Make Visible @visible.health
Oct 31, 2025 · 45 min
#24 Ehlers Danlos Syndrome & Orthostatic Intolerance in Chronic Fatigue conditions with Dr Peter Rowe
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 Make Visible @visible.health
Sep 30, 2025 · 1 hr 3 min
#23 Improving quality of life - managing P.E.M. and moving towards stability with O.T. Amy Mooney
Amy Mooney’s aim is to improve the quality of life for her patients. She is an occupational therapist specialising in the treatment of conditions that cause post-exertional malaise (PEM) and their comorbidities – working with patients with ME/CFS, Long Covid, Ehlers Danlos, fibromyalgia, dysautonomia, POTS, and MCAS. Operating from a place of huge empathy and understanding – she is also a mother of a child with these conditions – Mooney focuses on the individual needs of patients, creating personalised strategies to move patients out of a constant fight for survival, and into a situation in which they can start to improve. She does this through a full assessment of patient’s ADLs (activities of daily living) and their symptom fluctuations. In this week’s episode Mooney provides us with a breakdown of her approach – endeavouring to build a platform of stability and control for patients by prioritising daily functions and focusing on understanding how symptoms respond to different types of stressors, including cognitive, physical, social, emotional, and environmental factors. She explains the concept of dynamic energy management, responding to our body’s differing capacities on different days, and encourages patients to regain control of their illness by building awareness and learning from the setback. With a background in sensory integration therapy, Mooney highlights the significance of addressing all sensory inputs alongside the, perhaps more obvious, other stressors that contribute in this illness. Amy Mooney offers telehealth and clinical services to individual clients in private practice, but is also an educator – advising healthcare professionals globally, including contributing substantially to the Bateman Horne Center’s Clinical Care Guide, authoring multiple articles in “WORK: A journal of prevention, assessment and rehabilitation”, and striving to educate practitioners to a deeper understanding of P.E.M. and the tools to reduce it. Make Visible @visible_health @visible.health
Sep 15, 2025 · 49 min
#22 Vagus Nerve & inflammation: the body’s healing reflex with Dr. Kevin Tracey
Dr. Kevin Tracey is a pioneer in understanding the molecular basis of inflammation, and identifying the way in which neurons control the immune system via the Vagus Nerve. A neurosurgeon, scientist and entrepreneur, he is CEO of Feinstein Institutes, New York, where they bridge neuroscience, molecular biology and biomedical engineering. His lab’s discoveries led to the first clinical trials in neuromodulating devices paving the way for a new field, termed bioelectronic medicine. In his new book “The Great Nerve, the new science of the Vagus Nerve and how to harness its healing reflexes” he has distilled his research to try and make complex science accessible so that those of us without medical degrees are able to sort the fact from the fiction when it comes to the, much-discussed, Vagus Nerve. In this week’s episode Dr Tracey sits down with Emily Kate Stephens to discuss his expansive work and how he believes that this could be a tipping point in our management and treatment of a wide range of diseases. He explains the role of the Vagus Nerve, a highly complex superhighway carrying messages between the body and the brain, which controls the reflexes of organ function to maintain the body in homeostasis and balance the sympathetic and parasympathetic nervous systems. Understanding this, previously unmapped, connection between the body’s and the brain’s networks has huge implications for treating inflammatory conditions from rheumatoid arthritis to depression, with millions of patients already being treated with implanted neuromodulating devices. But, he also highlights the need for maintaining the highest scientific rigour and continuing to research why such treatment is effective in some patients and not all. He points to the need for larger clinical trials to understand the effectiveness of vagal nerve stimulation (VNS) in implanted devices and particularly in the less-regulated ear-based devices. He wants to arm patients with the information to enable them to self-advocate and explore the possibilities of using the healing power of the Vagus Nerve to replace anti-inflammatory drugs, with the potential to slow disease progression and accelerate healing. Scientific paper references: Sheep on a treadmill, J.Shanks 2023 The Inflammatory Reflex, K.Tracey 2002 FDA approval of VNS in Rheumatoid Arthritis 2025 Auricular Vagus Neuromodulation, review 2021 Books: The Great Nerve The Inflamed Mind Make Visible @visible_health @visible.health
Aug 27, 2025 · 40 min
#21 Living life with energy-limiting conditions - Personal wins & perspective, with Gez Medinger & Emily Kate Stephens
In a change to our usual format, this week Emily Kate Stephens sits down with fellow journalist, podcaster and chronic illness sufferer, Gez Medinger to explore their personal anecdotes and discuss the strategies that have made a difference in the trajectory of their health. Between them, over the last five years of their illnesses, they have interviewed hundreds of experts to unravel the science and medical advancements in Long Covid and other energy-limiting conditions. In this episode they discuss, reflect on and explore the ways in which they have applied all that they have learned to shape the course of their respective progress. In this, very personal, discussion they veer away from some of the hard science, despite their remarkable shared knowledge, and reveal how many of the softer, more holistic approaches to healing have made the biggest differences, not only in their journeys towards recovery, but in their outlooks on life. From fasting to finding acceptance, from psilocybin to breathwork, their discussions reveal that it does not seem to be drugs or medical intervention that has made the difference, rather nervous system regulation, simple grounding healthy habits, a slower pace and compassion that have really proved key tools. Perhaps this is because medicine really does not yet have the answers, but this conversation gives hope that, despite this, there are techniques and practices that can contribute to an improvement in quality of life for those suffering from these illnesses. Gez Medinger is a science journalist and former filmmaker, author of The Long Covid Handbook and host of his own YouTube channel - Gez Medinger. Emily Kate Stephens is a broadcast journalist who now focuses on health and medical journalism, and hosts Make Visible every two weeks. She is a qualified breathwork practitioner specialising in Nervous System Regulation and Buteyko. Both have had Long Covid since 13th March 2020. Make Visible @visible_health @visible.health
Aug 14, 2025 · 1 hr 4 min
#20 Practical guide to pacing and managing Post Exertional Malaise (PEM) with Dr Melanie Hoppers, Bateman Horne Center
Bateman Horne Center internist and paediatrician, Dr Melanie Hoppers, has always been driven to approach her patients’ treatment with a holistic strategy, combining first line medicines with lifestyle, diet, stress reduction and movement. But in 2015, when her daughter became sick with ME/CFS, it became an even more personal mission to understand, treat and create frameworks to assist people with chronic illness. Under the guidance of Dr Lucinda Bateman, and drawing on the expertise of her colleagues at the Bateman Horne Center, Dr Hoppers has ploughed her energy into helping patients to understand their conditions and their bodies, employing FDA approved drugs with lifestyle measures to make gains in their health and mitigate crashes. In this week’s episode Dr Hoppers talks through her primary strategies for pacing and managing post-exertional malaise (PEM) to enable patients to regain some control over their illness. Drawing on her personal experiences with her daughter, along with treating hundreds of people in-person and through telehealth, she shares her ideas and resources that people can use at home – from monitoring your morning heart rate, to documenting symptom flares and activities, this episode is packed full of real life strategies to help understand and monitor your illness, and advocate for yourself with healthcare professionals and family members. We also discuss the Bateman Horne Center’s Clinical Care Guide offering advice to patients and healthcare professionals in the diagnosis and management of ME/CFS, Long Covid, IACCs and the multiple co-morbidities that make these conditions inherently complex: Bateman Horne Center Clinical Care Guide Further BHC Resources for patients and professionals: Crash Survival Guide: practical strategies to manage PEM and prevent crashes Brief Educational videos: Diagnosing ME/CFS Post-Exertional Malaise Orthostatic Intolerance NASA Lean Test Instructions ER and Urgent Care Considerations for ME/CFS A Mother’s Perspective – Dr Melanie Hoppers advocating for children, and advice for other parents Make Visible @visible_health @visible.health