Are ME/CFS research breakthroughs finally bringing treatments closer? In the wake of Long Covid, the needle may be shifting — at last. 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. There is still no single diagnostic biomarker, and people who are more severely affected are often excluded from research entirely. 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 treatments? Themes include: the impact of Long Covid on ME/CFS funding and research; why genetics studies like DecodeME are key milestones toward individualised treatment; how precision medicine could transform care; and why a significant gap remains between research momentum and patient reality today. Guests: Dr Vicky Whittemore (NIH/NINDS), Amy Rochlin (Complex Disorders Alliance), Sonya Chowdhury (Action for ME), Dr Steve Gardner (PrecisionLife) and David Tuller (UC Berkeley).

When Dr Binita Kane — a Consultant Respiratory Physician and one of the first clinicians to recognise Long Covid — watched her own daughter’s life be derailed by the condition, it changed everything she thought she knew about medicine. In this episode, Dr Kane shares how her daughter’s illness forced her to unlearn parts of her medical training and find new answers beyond conventional care. That deeply personal journey now shapes how she treats thousands of patients at The Long Covid Clinic. We explore why rest, pacing, and energy management are central to recovery, why individualised and interdisciplinary care matters, and how tools like Visible help patients and clinicians make better decisions together.

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 advancing the 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’s transcutaneous device stimulates the nerve through the tragus of the ear — a non-invasive alternative to implanted technologies, backed by more than 100 studies and clinical trials across conditions including Long Covid, ME/CFS, hypertension, depression, fatigue, anxiety, and cognitive dysfunction. In this episode we explore: What the vagus nerve is and why it matters How vagus nerve stimulation works and the science behind it Non-invasive ear stimulation vs implanted devices Effects on HRV, inflammation, and neuroplasticity What the evidence says about effectiveness, safety, and adherence The potential role of VNS in chronic illness and everyday health Whether you’re living with chronic illness, curious about neuroscience, or interested in longevity and performance, this is one of the most exciting areas in health science right now. Make Visible | @visible.health | [email protected]

If you live with fibromyalgia, ME/CFS, EDS or chronic pain, you may have been told that exercise can help — but also learned that pushing too hard can worsen symptoms. In this episode, physical therapist Ryan Bourdo (Oregon Health & Science University, Portland) explains how individualised, patient-led rehabilitation strategies can support quality of life without becoming an added burden. Ryan specialises in fibromyalgia, Ehlers-Danlos Syndrome (EDS) and related conditions, using a compassionate, listening-first approach to care. We’re also joined by occupational therapist Amy Mooney, founder of OT4ME, who shares insights from more than 20 years working with ME/CFS, Long Covid, EDS, MCAS and Post-Exertional Malaise (PEM). Together, we explore pacing, movement, rest, low-stress rehabilitation, and why treating patients as individuals is essential for meaningful care. Topics include: • Movement and chronic pain management • Why rehabilitation must be tailored to the individual • Listening to patients with energy-limiting conditions • Understanding rest, pacing and Post-Exertional Malaise • Creating sustainable, low-stress therapy strategies • Finding manageable ways to improve daily life makevisible.com @visible.health [email protected]

For 23 years, Dr Lucy Foulkes lived with chronic pain, migraines, endometriosis, and unexplained symptoms. She saw neurologists, rheumatologists, urologists, and physiotherapists. Nobody connected the dots. Then a stranger’s Instagram message led her to a diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS). Dr Foulkes brings a rare dual perspective: an Oxford psychologist who researches diagnosis and mental health language, and a patient who spent two decades undiagnosed. If you live with unexplained chronic pain, fatigue, migraines, MCAS, POTS, endometriosis, or hypermobility — this episode is for you. We cover: - The siloed medical system and why it fails complex chronic illness patients - Dr Foulkes’ 23-year diagnostic journey through hEDS, chronic migraine, and endometriosis - The Beighton Scale, hEDS and Hypermobility Spectrum Disorder (HSD), and the changing diagnostic criteria in 2026 - The mental load of rationing medication, energy, and life itself - Self-diagnosis: danger or necessity? - Why diagnosis can feel like relief, not a sentence - Practical strategies for living well within chronic illness - Identity versus illness About Lucy Foulkes Dr Foulkes is an academic psychologist at the University of Oxford, and author of Coming of Age: How Adolescence Shapes Us (2024) and What Mental Illness Really Is… And What It Isn’t (2021).

What happens in the brain when a virus takes hold — and why do some people never recover? Dr Avindra Nath, NIH neurovirologist and Clinical Director of NINDS, has spent his career studying the neurological impact of viral infections — from HIV and Ebola to ME/CFS and Long COVID. In this episode he explains how viral remnants persist in the body long after acute infection, how immune exhaustion drives ongoing symptoms, and what the NIH’s landmark 2024 deep-phenotyping study revealed about ME/CFS — including striking sex differences in immune response that could change how we treat these conditions. He also shares details of three active NIH clinical trials for Long COVID: Viral Reservoir Study IVIG Study Checkpoint Inhibitor Study (pembrolizumab — enrolment opening April 2026) Emily Kate and Gez break down the science and discuss the controversies around the NIH team’s methodology.

80-90% of POTS patients are disabled to some extent — unable to work, go to school, or manage daily life. So why is it still so widely misdiagnosed? Dr Tae Chung, Director of the POTS Program at Johns Hopkins University, breaks down everything you need to know about Postural Orthostatic Tachycardia Syndrome — from diagnosis criteria to the latest treatment research, including his work on Long COVID-related POTS. He covers the full symptom picture — brain fog, dizziness, fatigue, nausea and temperature dysregulation — and explains why personalised care is essential when POTS presents alongside other conditions. Emily Kate and Gez also share practical strategies for patients: how to seek a diagnosis, the NASA lean test, hydration and salt protocols, and how to approach exercise safely.

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

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

From Olympic Hopeful to Long Covid: Oonagh Cousins When Olympic rower Oonagh Cousins was pre-selected for Tokyo 2020, her dream of representing Great Britain was within reach. But after COVID-19 swept through the team, Oonagh didn’t recover. She developed Long Covid, post-exertional malaise (PEM), and dysautonomia — forcing her from peak performance into chronic illness. In this powerful conversation with Emily Kate Stephens and Gez Medinger, Oonagh shares what happens when the mindset that makes you elite — resilience, discipline, pushing through — becomes the very thing that deepens your illness. We explore Long Covid in elite athletes, the psychological impact of losing an Olympic dream, the grief of chronic illness, and why rest — not grit — is often the path to recovery. Oonagh now advocates for people living with Long Covid and ME/CFS, working with Long Covid Support and helping shape patient-centred care through her work at Visible Health.