Make Visible: Chronic Illness Explored

Episod

• #36 My daughter’s Long Covid changed how I practice medicine with Dr Binita Kane 13.06.2026 58min

  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.
• #35 Vagus nerve stimulation for chronic illness and better health with Dr Elisabetta Burchi 29.05.2026 1j 1min

  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 | podfeedback@makevisible.com
• #34 Fibromyalgia and chronic pain management with Ryan Bourdo, Physical Therapist 15.05.2026 55min

  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 podfeedback@makevisible.com
• #33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes 01.05.2026 1j 13min

  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).
• #32 Hidden Virus, Immune Exhaustion & the Brain: Long Covid, ME/CFS and post-viral illness with Dr Avindra Nath (NIH) 24.04.2026 57min

  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.
• #31 POTS: Symptoms, understanding, and management with Dr Tae Chung 03.04.2026 57min

  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.
• #30 Navigating medical appointments with Dr Alba Azola 20.03.2026 52min

  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
• #29 Long Covid: what has six years taught us? 06.03.2026 1j 5min

  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  
• #28 From Olympic hopeful to Long Covid: Oonagh Cousins’ story 20.02.2026 53min

  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.
• #27 Unlocking the strategies for deep sleep with David Joffe 06.02.2026 59min

  Sleep strategies for Long Covid, insomnia, and chronic illness When you’re living with Long Covid or a complex chronic condition, sleep can feel like the one thing your body needs most — and the hardest thing to access. From insomnia and restless legs to sleep anxiety, constant waking, and unrefreshing rest, sleep disturbances are a common and exhausting part of chronic illness. In this episode of Make Visible, Emily Kate Stephens and Gez Medinger explore how sleep has affected — and been effected by — their Long Covid and chronic illness, and share practical strategies to improve sleep quality and quantity. Emily Kate is joined by sleep and respiratory physician David Joffe, who draws on over 40 years of clinical experience supporting patients with severe sleep disorders, respiratory disease, and Long Covid–related complications. Together, they discuss why Long Covid disrupts sleep architecture, how reduced slow-wave sleep impacts brain detoxification via the glymphatic system, and what the body needs to initiate and maintain restorative rest. This episode covers: 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 Emily Kate and Gez then reflect on the interview, sharing their lived experience of these strategies, discussing supplements in more detail, and highlighting why a personalised approach to sleep is essential when the nervous system, metabolism, and brain are highly dysregulated. About David Joffe David Joffe is a senior staff physician at Royal North Shore Hospital in Sydney, with specialist interests in insomnia, restless legs syndrome, non-invasive ventilation (NIV), sleep apnea, and Long Covid–related sleep disorders. He is Vice Chair of the World Health Network’s Long Covid Advisory Group.
• #26 The truth about exercise & pacing in ME/CFS, Long Covid & POTS with Todd Davenport 23.01.2026 1j 1min

  Why can exercise trigger post-exertional symptom exacerbation in ME/CFS and Long Covid—and how can crashes be avoided? Physiotherapist and exercise scientist Professor Todd Davenport joins Emily Kate Stephens on Make Visible to explain why traditional exercise approaches can worsen symptoms in energy-limiting conditions. Drawing on research including the two-day cardiopulmonary exercise test (CPET), Todd explores impaired oxygen use, disrupted energy production, and why this isn’t simply deconditioning. They discuss how pacing, heart-rate monitoring, and staying below the ventilatory anaerobic threshold can help people manage activity, reduce symptom burden, and improve baseline—without triggering crashes. Gez Medinger also joins Emily to reflect on the ideas through lived experience of energy-limiting illness.
• #25 You are not alone: navigating post-holiday fatigue, grief and acceptance in chronic illness. Gez Medinger & Emily Kate Stephens 09.01.2026 42min

  Living with chronic or invisible illness after the holidays can be overwhelming. In this episode of Make Visible, Emily Kate Stephens is joined by investigative science journalist and Long Covid advocate Gez Medinger to explore coping with chronic illness, ME/CFS, and Long Covid during and after the holiday season. They discuss EMDR therapy, nervous system regulation, breathwork, and emotional processing, sharing lived experience and practical strategies that support recovery and acceptance. This conversation offers validation and support for those living with ME/CFS, Long Covid, Fibromyalgia, EDS, POTS, Chronic Lyme, and other energy-limiting conditions.
• #24 Ehlers Danlos Syndrome & Orthostatic Intolerance in Chronic Fatigue conditions with Dr Peter Rowe 31.10.2025 45min

  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  
• #23 Improving quality of life - managing P.E.M. and moving towards stability with O.T. Amy Mooney 30.09.2025 1j 3min

  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
• #22 Vagus Nerve & inflammation: the body’s healing reflex with Dr. Kevin Tracey 15.09.2025 49min

  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
• #21 Living life with energy-limiting conditions - Personal wins & perspective, with Gez Medinger & Emily Kate Stephens 27.08.2025 40min

  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
• #20 Practical guide to pacing and managing Post Exertional Malaise (PEM) with Dr Melanie Hoppers, Bateman Horne Center 14.08.2025 1j 4min

  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
• #19 Female hormones and the immune system, with Abigail Goodship 30.07.2025 47min

  Analysis of wearable data gathered from the Visible app found that symptoms in Long Covid and ME/CFS fluctuated considerably in-line with the menstrual cycle, in a new study from Imperial College (currently in pre-print). In this week’s episode Abigail Goodship, a biomedical scientist at Imperial College, responsible for scrutinizing the data from almost 4000 women, talks us through the findings of the study, which corroborates something which women have been anecdotally reporting for years, and gives us insights into how we might be able to manipulate hormones and work with our cycles to live a more balanced illness. The points at which the immune and endocrine systems interact are complex and multi-layered with the hypothalamus, pituitary glands and ovaries all playing different roles in the functioning of our cycles. Emily Kate Stephens and Abigail take it back to basics, discussing the hormones involved and the way in which they shape the menstrual cycle, before diving into what the research teaches us about symptom variability which tends to worsen in the pre-menstrual phase and improve around ovulation. Understanding the hormones at play at these points, and the impact they have on our immune systems, inflammation levels and pain perception will be key to using this information to develop helpful strategies and potential treatments. We discuss the potential implications of pregnancy, vaccination, contraception, menopause and HRT in Long Covid and ME/CFS, along with the role of hormones in autoimmune conditions, as areas that are ripe for more substantial research in this much under-researched area of menstrual health. Abigail Goodship is a first year PhD student in the Department of Metabolism, Digestion and Reproduction at Imperial College London. Under the supervision of Dr Viki Male and Dr Bryn Owen, Abigail is researching the fascinating intersection of immunology and reproductive endocrinology, with a focus on how the immune system influences the menstrual cycle. Her work combines laboratory techniques like cytokine assays and hormone profiling with big data analysis, aiming to better understand menstrual changes after vaccination and the impact of chronic immune dysregulation on reproductive health. Drawing on expertise across both biological and computational sciences, Abigail is dedicated to bridging disciplines to advance women’s health, with a focus on translating research into meaningful, real-world impact. Her work is funded by the Medical Research Council (grant number MR/W00710X/1). Further references from this conversation: Menstruation as an inflammatory event The effect of ovarian hormones on rheumatoid arthritis Oestrogen and Progesterone in rheumatoid conditions Oestrogen in COVID-19 HRT in actute COVID-19 Impact of COVID vaccines on fertility Menstrual cycle and COVID vaccination & retrospective analysis ---- Make Visible @visible_health @visible.health  
• #18 Leading research, delivering hope: The Open Medicine Foundation’s mission with Linda Tannenbaum 11.07.2025 1j 5min

  The Open Medicine Foundation is the world’s largest non-profit aimed at diagnosing, treating and preventing complex chronic disease. This week, founder and CEO Linda Tannenbaum joins Emily Kate Stephens to discuss the OMF’s work, delivering collaborative research from some of the world’s leading scientists, and offering hope to millions. Now with six specialised centers operating out of leading institutions, from the ME/CFS Collaborative Research Center at Stanford to Harvard, to the University of Melbourne, Tannenbaum has overseen more than 68 projects to try and understand these life-changing conditions.  In today’s episode she explains the way in which the OMF was launched, in collaboration with the formidable Dr. Ron Davis, bringing together hundreds of scientists, across a huge range of specialities to try to create a multi-system framework to look at these multi-system diseases. And Tannenbaum discusses the details of the most recent studies and trials, including TREAT ME (patient-reported outcomes from 4,000+ participants), Bio Quest (AI-powered biomarker discovery), and the first OMF double blind placebo controlled trial LIFT – a groundbreaking study looking at the efficacy of LDN and Mestinon. From leveraging AI to hosting global research summits, the OMF is committed to bringing awareness, research and treatments to those suffering from chronic complex diseases, and whilst the ultimate goal is to find a cure for ME/CFS, in the interim they are working to improve the lives of patients through better understanding and management of the condition.   Make Visible @visible_health @visible.health
• #17 PEM: measuring the threshold and understanding the cause with Dr. Rob Wüst 30.06.2025 38min

  What is the threshold over which PEM is induced in chronic illness? This is a hugely important question for sufferers, and one for which Rob Wüst is trying to find an answer. Assistant Professor in Musculoskeletal Health and Physiology at the Vrije Universiteit Amsterdam, Dr. Rob Wüst is able to see the physiological impact of Long Covid and ME/CFS in skeletal muscle abnormalities. In his latest study (currently in preprint) he finds that “Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest”,  and the abnormalities that he observes in the muscles of this cohort of patients correlate with the Post-Exertional Malaise (PEM), autonomic dysfunction and wearable data that he gathered in another recent study. In this week’s episode Wüst explains to Emily Kate Stephens how he observed exercise-induced worsening of symptoms in almost half of Long Covid patients when they exceeded their ‘ventilatory threshold’ but the much of the time this is from everyday activities such as hanging the laundry or carrying the groceries.  But they discus He discusses the physiological clues emerging from exercise testing and muscle biopsies in patients when viewed alongside wearable data and expounds on the circulating theories on this, including mitochondrial dysfunction, local hypoxia, and ion channel abnormalities.  And he explores the parallels and distinctions between Long Covid and ME/CFS and why interdisciplinary collaboration is vital to unlock these complex, multi-systemic diseases. The Impact of Bedrest Study 2024 Skeletal muscle adaptations and PEM in LC 2024 Should we be careful with exercise in PEM in LC? 2025 Make Visible @visible_health @visible.health