Make Visible: Chronic Illness Explored

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.

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.

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Download the transcript here.

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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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Find it easier to read than listen? Download the transcript here.

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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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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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