Make Visible: Chronic Illness Explored

Visible with Emily Kate Stephens
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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 @visible.health

  1. #37 ME/CFS breakthroughs: are treatments getting closer?

    23 hr ago

    #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. Make Visible @visible.health podfeedback@makevisible.com

    1 hr
  2. #36 My daughter’s Long Covid changed how I practice medicine with Dr Binita Kane

    13 Jun

    #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

    59 min
  3. #35 Vagus nerve stimulation for chronic illness and better health with Dr Elisabetta Burchi

    29 May

    #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. Interested in taking part or sharing feedback on Make Visible?  Please click here. Make Visible @visible.health podfeedback@makevisible.com

    1hr 1min
  4. #34 Fibromyalgia and chronic pain management with Ryan Bourdo, Physical Therapist

    15 May

    #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

    55 min
  5. #33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes

    1 May

    #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

    1hr 13min
  6. #32 Hidden Virus, Immune Exhaustion & the Brain: Long Covid, ME/CFS and post-viral illness with Dr Avindra Nath (NIH)

    24 Apr

    #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

    58 min
  7. #31 POTS: Symptoms, understanding, and management with Dr Tae Chung

    3 Apr

    #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

    58 min
  8. #30 Navigating medical appointments with Dr Alba Azola

    20 Mar

    #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

    53 min
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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 @visible.health

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