Make Visible: Chronic Illness Explored

Dr Alba Azola, a rehabilitation physician leading the ME/CFS program at Johns Hopkins, shares practical strategies for navigating medical care. She discusses building multidisciplinary teams, using symptom diaries and pacing, preparing focused appointments, and tools like heart rate data to communicate limits. The conversation highlights targeted, symptom-focused approaches and ways to access and coordinate the care you need.

Joseph Breen, Section Chief for Adaptive Immunity at NIAID who coordinates Long Covid research priorities, reflects on six years of Long Covid science. He outlines prioritized clinical trials like antivirals, low‑dose naltrexone, GLP‑1 agents and stellate ganglion block. The conversation covers patient partnership in research, international trial coordination, and balancing urgent treatments with careful study design.

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 @visible.health

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 @visible.health

Todd Davenport, physiotherapist and exercise scientist who studies ME/CFS, Long Covid and post-exertional neuroimmune exhaustion. He explains why traditional exercise can trigger post-exertional symptom exacerbation. Two-day CPET findings and impaired oxygen use are explored. Heart-rate–based pacing, estimating thresholds without CPET, and how individualized activity management can prevent crashes and slowly improve baseline.

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 @visible.health  

Dr. Peter Rowe, a leading pediatric expert at Johns Hopkins, delves into the intricate relationships between Ehlers-Danlos Syndrome (EDS), orthostatic intolerance (OI), and chronic fatigue conditions. He explains how OI affects nearly all his patients and shares his revolutionary approach to treatment that has improved lives. Rowe also discusses the significance of patient history, the overlap of genetic factors, and the impact of lifestyle changes. He champions the notion that ME/CFS isn't psychosomatic, refuting misconceptions while advocating for better clinical practices.

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

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

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