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

Latest Episodes:

#31 POTS: Symptoms, understanding, and management with Dr Tae Chung Apr 03, 2026

Show notes

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

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#30 Navigating medical appointments with Dr Alba Azola Mar 20, 2026

Show notes

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

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#29 Long Covid: what has six years taught us? Mar 06, 2026

Show notes

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.

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#28 From Olympic hopeful to Long Covid: Oonagh Cousins’ story Feb 20, 2026

Show notes

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.

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#27 Unlocking the strategies for deep sleep with David Joffe Feb 06, 2026

Show notes

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.

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#26 The truth about exercise & pacing in ME/CFS, Long Covid & POTS with Todd Davenport Jan 23, 2026

Show notes

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

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#25 You are not alone: navigating post-holiday fatigue, grief and acceptance in chronic illness. Gez Medinger & Emily Kate Stephens Jan 09, 2026

Show notes

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.

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#24 Ehlers Danlos Syndrome & Orthostatic Intolerance in Chronic Fatigue conditions with Dr Peter Rowe Oct 31, 2025

Show notes

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

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#23 Improving quality of life - managing P.E.M. and moving towards stability with O.T. Amy Mooney Sep 30, 2025

Show notes

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.

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#22 Vagus Nerve & inflammation: the body’s healing reflex with Dr. Kevin Tracey Sep 15, 2025

Show notes

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: