As researchers uncover more about these conditions, we're beginning to see how the same underlying biological processes — from disrupted homeostasis to mast cell activation — can appear across very different diagnoses.

For Episode 40 of Make Visible, we've revisited some of our most illuminating conversations from across the series, drawing on decades of scientific research and clinical experience to explore the recurring themes connecting these conditions.

Our guests include:

• Nancy Klimas M.D. on disrupted homeostasis and why ME/CFS, Long Covid and related conditions often need to be approached across multiple body systems
• Peter Rowe M.D. on orthostatic intolerance, blood flow and the links between hypermobility, EDS and ME/CFS.
• Lucinda Bateman M.D. on chronic pain, overlapping conditions and the importance of identifying and treating comorbidities in in ME/CFS, Long Covid and fibromyalgia.
• Todd Davenport DPT on post-exertional malaise (PEM) and what exercise physiology research has revealed about the body’s response to exertion.
• Dr. Theoharis Theoharides on mast cell activation (MCAS) and the range of symptoms it may help explain.

Emily Kate Stephens and Gez Medinger reflect on what this science means for people living with complex chronic illness.

Together, these conversations paint a hopeful picture: as our understanding of ME/CFS, Long Covid, EDS, MCAS and related conditions grows, so too does our ability to manage symptoms and improve care.

Nancy Klimas M.D. is Director of the Institute for Neuro-Immune Medicine at NSU, and a leading voice in translational research focused on chronic illness, Gulf War Syndrome, and Long Covid. With decades of experience in immunology and clinical science, Dr. Klimas is a champion for an integrative, personalized approach to patient care.

Listen to the full interview in Episode 15.

Peter Rowe M.D. 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 is a leading voice for adolescents and young people with Ehlers Danlos Syndrome (EDS) and Fatigue-related conditions.

Listen to the full interview in Episode 24.

Lucinda Bateman, M.D. is founder and Chief Medical Officer of the Bateman Horne Center, Salt Lake City, whose mission is “improving access to informed health care for individuals with ME/CFS, Long COVID, and fibromyalgia by translating clinical expertise into medical education and research initiatives”. Dr. Bateman was one of the researchers responsible for the National Academy of Medicine’s 2015 report on ME/CFS.

Listen to the full interview in Episode 5.

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.

Listen to the full interview in Episode 26.

Dr. Theoharis Theoharides is Executive Director, Center of Excellence for Neuroinflammation Research (CENIR) & Professor, Institute for Neuro-Immune Medicine at Nova Southeastern University. Theoharides, ‘The Mast Cell Master’ is Adjunct Professor of Immunology, at Tufts School of Medicine where he was Professor and Director of Molecular Immunopharmacology & Drug Discovery and has been at the forefront of mast cell research for over 30 years.

Listen to the full interview in Episode 13.

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Now 21, Lizzie is slowly reemerging into the world she left behind. Building her independence, she has relearned to walk, started exploring her local area and has even started volunteering her time and skills. According to Amy, Lizzie has “moved mountains” to get where she is today, but it is the determination and spirit of them both that has changed Lizzie’s course.

In this episode Lizzie joins her mother, Amy Mooney, an occupational therapist who became her full-time carer. Through trying to understand her daughter’s condition, Amy has become a respected leader in the complex chronic illness space, helping people manage their conditions and improve their quality of life, and educating other practitioners globally.

Together, they reflect on navigating this experience as daughter and mother, patient and carer. They share the years spent searching for answers, the grief of losing childhood and independence, and the slow, complicated process of re-entering the world.

In this episode, Lizzie and Amy discuss:

• Growing up with severe ME/CFS and EDS
• Spending eight years bedbound, including four years completely flat
• Losing childhood, education and independence to chronic illness
• How online friendships became a lifeline
• Tools to maintain a sense of self
• Relearning the outside world after years in bed
• Why contentment became more important than hope

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Dr Powers specializes in treating ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, and MCAS, and trains other healthcare providers to do the same. While he doesn't promise a cure, his "pacing, not pushing" approach helps patients achieve measurably shorter, less intense, and less frequent crashes.  These are outcomes his patients consistently report over months of care.

In this episode, we discuss:

• Why pacing remains one of the hardest skills for chronic illness patients to learn, and how to start
• The key difference between POTS and POTS with post-exertional malaise (PEM), and how Dr Powers assesses it
• Why standard graded exercise programs (like the CHOP/Levine Protocol) can worsen PEM symptoms
• Dr Powers' nervous system toolbox: cold therapy, compression boots, vibration devices, and supplemental oxygen
• How physical therapy can support people with mast cell activation syndrome (MCAS)
• How wearables like Visible, and trained service dogs, can flag an impending crash before it fully hits
• Why "permission to rest" needs to be built into clinical care, rather than treated as an afterthought

Dr Clayton Powers works with the Bateman Horne Center, is a contributor to many of their free resources including the Clinical Care Guide, Therapy for Patients with PEM series and Coffee with a Clinician series. He has contributed extensively to education and research, including a feasibility studies on wearables for POTS management and a systematic review on the impact of exercise on POTS.

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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.

Tahlia Ruschioni is the Executive Director of the Bateman Horne Center, where she has led the transformative growth of the Medical Education Resource Center (MERC) as a global model for clinician education and training in post-infectious disease care, reaching more than 13,000 healthcare professionals across 90 countries and 46 U.S. states, offering accredited medical education in the clinical management of complex, multisystem illnesses. She led the development and launch of the BHC  Clinical Care Guide which provides an actionable roadmap for clinicians of ME/CFS, Long Covid and Infection-Associated Chronic Conditions.

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.

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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.

• 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.

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.

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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.

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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.

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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.

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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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“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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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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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.

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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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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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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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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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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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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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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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

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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.

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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

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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

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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.

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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

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Emily Kate Stephens is joined by Dr Michal Caspi Tal, Principal Scientist of the Tal Research Group and Associate Scientific Director at the Center for Gynepathology Research. She is responsible for innovative research seeking answers about the the overlap between infection, immune dysregulation, and chronic illness; alongside working to break menstrual taboos, creating a scientific framework for understanding the implications of the female reproductive system on our health and our sickness

Her lab has launched MIT MAESTRO study, a groundbreaking research initiative using leading edge technology, aimed at uncovering the links between infection-associated illness, immune dysregulation and mitochondrial dysfunction, juxtaposing Long Covid against acute and Chronic Lyme. The team study the way in which pathogens interact with the immune system, genetics, and each other to create overlaps with POTS, MCAS, gynaecological conditions and connective tissue disorders such as hEDS.

The Tal Research Group is working to bridge engineering and biology to fill critical research gaps— particularly around chronic illnesses such as endometriosis, acute and chronic Lyme disease, Long Covid & ME/CFS. Their work is developing predictive diagnostics and illness trajectory maps to help us understand who is at risk of developing infection-associated chronic conditions, and why.

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In this week’s episode Emily Kate Stephens sits down with Dr Nancy Klimas at Nova Southeastern University (NSU), Florida, to discuss the trial alongside the groundbreaking research and integrative care, that is taking place at the Institute for Neuro-Immune Medicine, looking at Long Covid, ME/CFS and other complex conditions.

The trial, a collaboration between Nova Southeastern University and the Schmidt Initiative for Long Covid, will use an AstraZeneca drug, which is already approved for COVID-19 prevention in those with compromised immunity, on 100 patients in a double-blind, randomised controlled trail. And Dr Klimas, a globally recognized expert in immunology and chronic illness, believes that this has the potential to be a curative treatment for the disease in around 40% of patients.

Alongside this new study, we discuss the role of computational modelling and the progress that AI is having in uncovering hidden patterns in chronic disease; the way in which gender differences shape inflammatory responses and treatment strategies; and the critical importance of restorative sleep, nutrition, and anti-inflammatory approaches in improving the lives of patients.

We discuss some of the other studies in which the INIM are involved – the Reboot Study, Microbiome research, probiotics, and the COVIDUP study, along with the power of international collaboration, the challenges of funding and the amazing contribution of patients.

Dr. Nancy Klimas is Director of the Institute for Neuro-Immune Medicine at NSU, and a leading voice in translational research focused on chronic illness, ME/CFS, Gulf War Syndrome, and Long Covid. With decades of experience in immunology and clinical science, Dr. Klimas is a champion for an integrative, personalized approach to patient care.

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In this week’s episode Dr. David Putrino discusses the findings.  He, in collaboration with leading immunologists, microbiologists and data scientists, tracked data points from 5000 Visible app users (who enrolled in the study) to establish that HRV and resting heart rate can be used to predict a crash.  Analyzing more than 55,000 readings over 1000 days they were able to see changes in the autonomic nervous system of contributors using this biometric data.  The largest study of its kind, these findings have the potential to provide the basis for individualised care strategies for this enormous cohort of patients.

Here we discuss the function and dysfunction of the autonomic nervous system.  Dr. Putrino gives us an overview of heart rate variability, the way in which it fluctuates, what its readings can determine about our health and ways in which these can be influenced. We talk through the power of breathwork including two of Dr Putrino’s studies – on resonant breathing and hypocapnia – showing the way in which breathing impacts our physiology but determining that we have innate power to influence our health.

As Director of Rehabilitation Innovation Mount Sinai Health, Dr. Putrino‘s focus is on real-world solutions for this patient cohort. In a world where new drug approval takes 10 years and technologies in this field can take 17 years to reach market, his aim is to bring patients tangible treatments and protocols in a practical timeframe. Currently involved in clinical trials for rapamycin and vagal nerve stimulation, Dr. Putrino endeavours to re-purpose drugs and technologies that are already approved in other situations to create personalised strategies for this engaged cohort.

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In this week’s episode, we delve into the role of mast cells in complex chronic disease. Dr. Theoharides explains how mast cells are distributed throughout the body, the various stressors that can activate them, and how their activation may contribute to overlapping symptoms seen in conditions such as migraines and irritable bowel syndrome. The comparisons draw into question whether a degree of mast cell activation is co-morbid in many of these conditions, or indeed whether some of these conditions are a symptom of mast cell activation.

He underscores the urgent need for better diagnostic tools, greater awareness within the medical community, and a broader, more integrative treatment strategy. This includes lifestyle interventions and the use of natural flavonoids, which have been proven to inhibit mast cell activity. Dr. Theoharides also discusses the ongoing challenges in securing research funding and the potential for integrative approaches to address complex conditions – thinking outside the box to treat patients individually, listening to their needs and treating accordingly – which is what he believes they are able to do with his team at NSU

Dr. Theoharides is Executive Director, Center of Excellence for Neuroinflammation Research (CENIR) & Professor, Institute for Neuro-Immune Medicine at Nova Southeastern University.  Prior to this he spent four decades at Tufts University where he was Director of Molecular Immunopharmacology & Drug Discovery.

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Dr Elizabeth Unger, chief of Chronic Viral Diseases Branch, and epidemiologists Yang Chen and Elizabeth Fall, have contributed to numerous studies exploring various aspects of ME/CFS, from cognitive impacts to looking for biomarkers. In this episode, we focus on their latest paper, which examines the prevalence of Chronic Overlapping Pain Conditions (COPCs) that occur in ME/CFS.

Three-quarters of ME/CFS patients suffer from COPCs (defined as: Chronic low back pain; Chronic migraine/Headache; Fibromyaligia; Endometriosis; Interstitial cystitis/Irritable bladder; Irritable bowel syndrome (IBS); Temporomandibular disorder (TMD); Vulvodynia) with women being more likely to experience at least one of these co-occurring conditions.  The understanding of why these are so prevalent in ME/CFS is the next piece of the puzzle.

A large portion of this team’s work is educating patients and carers along with healthcare workers.  They are immensely proud of their resources such as their patient tool kit, management strategies and disability advice, tailored to helping patients advocate for themselves and their family members to receive appropriate diagnosis, treatment and care.  Sitting alongside this is a section for healthcare providers where they present a clinical overview to assist in the diagnosis and care, with a toolkit containing many educational and reference resources.

The MCAM data and biospecimens are also available (via application) to other investigators to maximise the impact of this longitudinal study.

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The study, carried out by the RECOVER initiative, and published in the Journal of General Internal Medicine confirmed that ME/CFS has a 4.5% prevalence among those who did not recover from COVID-19, and forms the most severe subtype of Long Covid.  Whilst not all Long Covid patients will fulfil the criteria for ME/CFS, the ability to study the conditions in parallel and at the point at which they cross over is bringing us unprecedented insights into long term energy-limiting conditions.

In this week’s interview Dr Vernon highlights the challenges in identifying definitive biomarkers for ME/CFS due to its heterogeneity and the fact that there are multiple triggers, but explains how the longitudinal data gathered in the RECOVER study is making roads into understanding the pathogenesis and necessary treatments for ME/CFS.  This is due to one crucial factor: here we are presented with a huge group of ME/CFS patients who have developed the illness from one trigger, SARS-COV2.

Whilst the findings are shocking, and the stark quantity of people with ME/CFS is rising dramatically, Dr Vernon is positive about the way in which we can optimize this moment in time, with the research attention and funding in place, to reveal what is causing ME/CFS and then go on to work out how it can be treated.

Dr Vernon has more than 30 years’ experience in researching chronic illnesses, authoring hundreds of papers on the subject, working with the government and non-profits to move the needle in this research arena.  She is dedicated to understanding what drives conditions such as ME/CFS, whilst advocating for greater involvement amongst the scientific and medical communities.  Formerly the Scientific Director at  Solve ME/CFS Initiative, Dr Vernon is tireless in her bid to advance research, educate and improve care for those impacted by ME/CFS.

Additional references from the episode:

JAMA paper detailing clusters in Long Covid

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Drawing on her background in counselling, yoga and neuro-linguistic programming - alongside her own experience of illness - Suzy launched an online platform in September 2020 to help people with post-viral and energy-limiting conditions. Her Rest, Repair, Recover program provides a space for support, community, and a deeper understanding of the nervous system.

The program brings together practitioners with lived experience of these conditions, offering an interactive framework of movement, breathwork, creativity, and rest - all aimed at regulating the autonomic nervous system.

In this two-part conversation, Bolt explores the cascade effect of small, positive changes—finding joy, building community, and practicing self-compassion—and how these shifts can influence the nervous system, immune function, and overall well-being.

In this, the second part of the conversation, we discuss the kindness, creativity and distraction from symptoms; along with nutrition, celebrating progress and the effect that these programmes have had on people’s lives.

Over the past five years Suzy Bolt has become a mainstay for those looking to improve their condition through a holistic approach. In a recent survey of those who have attended her programmes, the majority said that it improved their overall energy levels, improved their mood, alleviated some of their medical concerns and gave people confidence to manage their symptoms. She is regularly consulted and recommended by the NHS as an additional strand to medical help that people may be being offered.

Her approach endeavours to address autonomic dysfunction as a way to create optimum environment in which people can start to feel improvements in their health.

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Drawing on her background in counselling, yoga and neuro-linguistic programming - alongside her own experience of illness - Suzy launched an online platform in September 2020 to help people with post-viral and energy-limiting conditions. Her Rest, Repair, Recover program provides a space for support, community, and a deeper understanding of the nervous system.

The program brings together practitioners with lived experience of these conditions, offering an interactive framework of movement, breathwork, creativity, and rest - all aimed at regulating the autonomic nervous system.

In this two-part conversation, Bolt explores the cascade effect of small, positive changes—finding joy, building community, and practicing self-compassion—and how these shifts can influence the nervous system, immune function, and overall well-being.

In this, the first part of the conversation, we discuss the impact of isolation and power of community; we delve into Bolt’s journey and discuss the way in which our histories and genetic make up play into these conditions; and we delve into the divisive topic of exercise.

Over the past five years Suzy Bolt has become a mainstay for those looking to improve their condition through a holistic approach. In a recent survey of those who have attended her programmes, the majority said that it improved their overall energy levels, improved their mood, alleviated some of their medical concerns and gave people confidence to manage their symptoms. She is regularly consulted and recommended by the NHS as an additional strand to medical help that people may be being offered.

Her approach endeavours to address autonomic dysfunction as a way to create optimum environment in which people can start to feel improvements in their health.

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Whilst ME/CFS encompasses huge numbers of people who have a shared end point in their symptom sets, VanElzakker believes that we need to seize this moment of Long Covid - where we know what the pathogenic driver is - to develop our understanding and testing across these post-infectious conditions.

The juncture of the brain and the immune systems is the focus of VanElzakker’s work where he studies the drivers of chronic disease. Assistant Professor at Harvard Medical School, Massachusets General Hospital , and instructor at Tufts University, VanElzakker is a researcher, educator and patient advocate, taking a holistic approach to the science of his field.

Until 2020, VanElzakker focused his research on PTSD and ME/CFS, studying the interplay between the immune and nervous systems in these conditions. Drawing on this expertise in post-viral illnesses and the long-term effects of immune and nervous system dysregulation—whether triggered by a single event or persistent stimulation—he co-founded The PolyBio Research Foundation with the brilliant Amy Proal. Together, they have established a cutting-edge research initiative that brings together top scientists to develop a deeper, more cohesive understanding of these complex diseases.

In this episode VanElzakker shares insights into his research and the challenges surrounding chronic illness healthcare. He points to the need for improved testing protocols in ME/CFS to enable patients to rule out or identify underlying triggers for symptoms which have the potential to be addressed. He explains the differences that he has seen between the conditions of pre-Covid ME/CFS and the chronic consequences of COVID-19 in Long Covid patients. And he highlights PolyBio’s strategy of using the impetus and funding that has been brought to the fore to grapple with the millions of people suffering from Post-Covid conditions, to gain deeper understanding of post-viral conditions at large with the intention of moving other post-viral patients, from ME/CFS to post-Lyme, into studies as soon as is viable.

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Working with Professor Amy Arnsten (and referenced in our previous episode), Dr Fesharaki-Zadeh has developed a treatment regimen using Guanfacine and N-acetylcysteine that he found to be effective in improving prefrontal cortical function in TBI.  Taking their knowledge from these patients and applying it to the treatment of the brain fog experienced by Long Covid patients, Fesharaki-Zadeh started using the same protocol and anecdotally it has had considerable impact in improving cognitive symptoms, emotional regulation, and even sleep.

Dr Fesharaki-Zadeh is pursing more empirical evidence, pushing for clinical trials to look at this treatment protocol.  His rationale for the treatment of cognitive deficits in Long Covid seems sensible and his proposed strategy is proven safe.

This conversation discusses the need for validating patients’ experiences by providing physiological understanding of their symptoms, the importance of expanding access to effective treatments for Long Covid and other conditions, and emphasizes the dynamic and interactive nature of the brain and the importance of considering it as part of the whole network rather than an isolated entity.

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In this week’s episode we discuss Prof. Arnsten’s recent paper published in Biological Psychiatry looking at the impact of stress (both physical and mental) and inflammation on the prefrontal cortex, an area of the brain with implications in a range of conditions from depression and schizophrenia, to Alzheimer's and Long Covid.

Arnsten explains how she and her lab are able to observe the biological changes that take place in the brain when under chronic stress, or triggered by inflammation, which can lead to a primitive survival response: shutting down higher cognitive functions.  This area of the brain is responsible for the regulation of our emotions, our mood and our behaviour.  Changes in this region lead to the brain fog, memory issues and emotional dysregulation that is prevalent in these disorders.

And she talks us through the pathway of kynurenic acid production, levels of which are elevated in conditions such as Long Covid which inhibits neurotransmission.  The understanding of this could lead to break-throughs in our diagnosis and treatment of such conditions.  And Prof. Arnsten is already seeing promising potential with guanfacine, a compound that her lab developed for the treatment of ADHD (approved by the FDA in 2009).  A combination of guanfacine, which strengthens connections in the prefrontal cortex, with the anti-inflammatory, antioxidant supplement NAC (N-acetyl cysteine) seems to show possible beneficial applications in Long Covid.

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Dr. Bateman was one of the researchers responsible for the National Academy of Medicine’s 2015 report on ME/CFS, a seminal paper that helped define the diagnostic criteria for ME / CFS.  Since then she has authored innumerable papers, working with the CDC alongside many of the stalwarts of the chronic illness medical community as part of the longitudinal multi-centre (MCAM) research that has looked at the impact, treatment protocols and drivers of ME/CFS.

A member of the ME/CFS Clinican Coalition, she is dedicated to advancing understanding of these chronic conditions and improving care and outcomes for patients.  Her work has found many benefits from treating co-morbidities in chronic illness, such as POTS, with her most recent publication addressing chronic overlapping pain conditions, including fibromyaligia, that are regularly found alongside ME/CFS.

And since the inception of Long Covid her work has pivoted to include this new heterogenious group of post-infection patients.  Much of her recent work has been looking at the parallels and differences between these illnesses and applying her historic knowledge to this new disease: she is one of the ME/CFS and Long Covid specialists working with the NIH on the RECOVER program. And her deep understanding of post- exertional malaise once again highlights the importance of pacing across these conditions

Her work over the decades has been tireless to developing understanding of, and treatment paradigms for, chronic post-infectious syndromes.

Dr. Boon Lim uses the poem The Blind Man and the Elephant to exemplify the need for us and our medical practioners to approach chronic illness by looking at the body and mind as a whole rather than individual parts.  He describes the body affected by Long Covid as a factory for which we need to find the off-switch.  And he sets out the image of a gazelle in long grass: constantly on high alert anticipating attack, as a way for us to understand the way in which our bodies have been pushed into chronic stress.

Dr Lim explains the way in which returning to homeostasis requires balancing of our sympathetic and parasympathetic systems and the consequences of imbalance.  He calls for us to consider the idea of stress reduction for alleviating some of the negative consequences of post-viral illness and we discuss the power of the breath, mindfulness and acceptance, not simply as a way to calm the mind, but to influence the entire body and nervous system.

Dr Lim is able to demonstrate the scientific basis for what some might consider to be more esoteric ideas, discussing the ENO’s Breathe Programme, which carried out one of the first RCTs performed in Long Covid, alongside the way in which HRV monitoring can show the changes driven by such strategies.  Despite his heavily medical credentials, Dr Lim endeavours to grasp the mental and emotional aspects of chronic illness, whilst highlighting the importance of collaboration between patients and healthcare providers to achieve progress.

The books discussed in this episode were: Johann Hari's -  "Stolen Focus: Why You Can't Pay Attention" James Nestor's - "Breath: The New Science of a Lost Art"

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Typically Dr Hu was dealing with Alzheimer's and related dementias in patients who were cognitively ageing whilst otherwise healthy, and those whose cognition was affected by their illness such as HIV or MS.  But since the Covid pandemic began, Dr Hu started seeing large numbers of patients whose ‘brain fog’ was sufficiently severe that they suspected they had early onset Alzheimer's, along with those who knew that their cognition, memory and thinking had demised to a degree that they were aware of it, but standard testing was inconclusive.

In this week’s episode we discuss the way in which Hu and his team at Rutgers used brain imaging and analysis of cerebrospinal fluid (CSF), which enabled them to identify changes in the brain of patients with brain fog.  Their study, published in Cell, revealed that they could see that these patients had the markers of persistently activated immune function in the brain.  Whilst they were unable to detect SARS CoV-2 virus in the CSF, their findings correlate with the theory that those with Long Covid have viral persistence, and they were also able to see that this brain activation was no longer present in those that recovered.

We talk through the implications of these findings for treatment and research into other chronic conditions, and discuss methods that might assist the immune system in recovering from these cognitive impairments and alleviate symptoms.  And reassuringly, Hu’s ideas involve trials in treatments that already have FDA approval for other conditions, meaning perhaps resolution is not so far out of reach.

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In this week’s episode, which is Part 1. of this interview, Dr Boon Lim discusses the challenges that are faced by patients with this autonomic dysfunction, and the methods he uses to assess – the tilt table test combined with a detailed patient history.  He describes physiologically what happens to the patients’ bodies and brains with POTS or POTS-like syndrome and how that causes vasovagal syncope (fainting).  We talk about the importance of hydration and how that alters the body’s ability to cope with changes in posture that can induce tachycardia, and the detrimental effects of bedrest or reduced movement.

In the episode Dr Boon Lim references his diagram showing the changes that takes place in the blood and blood pressure when hydration is increased.  The video can be found here, on his stopfainting.com website.

For a man with such a depth and breadth of knowledge Dr Boon Lim’s openness and humility are stark and his strategies for equilibrium are remarkably simple.  If you would like to know more about his approach and what he means by ‘missing the elephant’ please tune in for Part 2. of this interview – and if you can’t wait two weeks please ‘follow’, ‘like’, ‘subscribe’, or review here on your podcast app, or comment or contact us with your thoughts via the links below, and perhaps we can release it sooner.

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In this week’s interview with PLRC’s Hannah Davis and Lisa McCorkell we discuss their organisation’s achievements - the progress and impact of patient-led advocacy and research in Long Covid and related conditions.  We discuss some of the many studies that they have funded including the patient-generated hypotheses journal that they launched in May 2023, and the Long Covid Moonshot project:

Long Covid Research Moonshot Act of 2024, which aims for $1 billion annual funding for research and treatment for the next 10 years, is a bill that has now been proposed to the U.S. government by Senator Bernie Sanders. “The legislation that we have introduced finally recognizes that long Covid is a public health emergency and provides an historic investment into research, development, and education,” Sanders said.

PLRC have been instrumental in the introduction of this legislation within the U.S. and, as they continue to try and change patient outcomes for the better globally, we discuss their international collaborations and what is still needed: better-informed public policy and medical education.

Join us every two weeks as journalist Emily Kate Stephens uses her experience of living with an energy limiting condition to bring us the latest research and insights from the world’s leading experts, scientists and healthcare professionals.  Including ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, and more, we delve into the science of invisible illness.

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