Make Visible: Chronic Illness Explored

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

 

Make Visible

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Welcome back to Make Visible.

For those living with chronic illness or invisible illness, the New Year rarely brings a “new you” — and that can be especially hard after the emotional and physical demands of the holiday season. If you’re navigating ME/CFS, Long Covid, Fibromyalgia, Ehlers-Danlos Syndrome (EDS), POTS, Chronic Lyme, or another energy-limiting condition, please know that you are not alone: Make Visible is back with new ideas, new guests, and a familiar line up of empathy, exploration and a little humour.

Journalist and host Emily Kate Stephens is joined once again by Gez Medinger, investigative science journalist, patient advocate, and co-author of The Long Covid Handbook, for an honest conversation about living with complex chronic illness, managing post-holiday overwhelm, and finding gentler ways forward.

Together, Emily Kate and Gez explore the emotional toll of the holidays with chronic illness — from expectations and guilt, to isolation and burnout — and share personal strategies that have helped them cope, regulate their nervous systems, and release stored stress and trauma.

In this episode, they discuss:

EMDR therapy and Gez’s personal experience using it for Long Covid and trauma

The importance of processing emotions

Breathwork and nervous system regulation as tools for symptom support

Finding acceptance, releasing comparison, and celebrating small wins

This conversation blends lived experience, practical tools, and emerging science, offering validation, reassurance, and hope to anyone navigating life with chronic illness.

Go gently into the New Year, good people. Share this with someone who needs to feel seen - together, we can make small differences.

Gez Medinger is an investigative science journalist, filmmaker, and Long Covid patient advocate. He is co-author of The Long Covid Handbook (with Prof. Danny Altmann) and the creator of a YouTube channel with over 7 million views, featuring interviews with world-leading clinicians. He has conducted over a dozen patient-led studies, and his work has been featured in The New York Times, New Scientist, and Men’s Health.

Gez previously joined Make Visible on Episode 21.

Emily Kate Stephens is a broadcast journalist and breathwork practitioner. As a television news producer when she became sick with Long Covid in 2020, she turned her expertise to interviewing the leading experts in infection-associated chronic conditions. She is passionate about sharing knowledge and revels in connecting the work of practitioners across multiple disciplines, and sharing her lived experience to support patients and deepen understanding.

 

Make Visible

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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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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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Dr. Kevin Tracey is a pioneer in understanding the molecular basis of inflammation, and identifying the way in which neurons control the immune system via the Vagus Nerve. A neurosurgeon, scientist and entrepreneur, he is CEO of Feinstein Institutes, New York, where they bridge neuroscience, molecular biology and biomedical engineering. His lab’s discoveries led to the first clinical trials in neuromodulating devices paving the way for a new field, termed bioelectronic medicine.

In his new book “The Great Nerve, the new science of the Vagus Nerve and how to harness its healing reflexes” he has distilled his research to try and make complex science accessible so that those of us without medical degrees are able to sort the fact from the fiction when it comes to the, much-discussed, Vagus Nerve. In this week’s episode Dr Tracey sits down with Emily Kate Stephens to discuss his expansive work and how he believes that this could be a tipping point in our management and treatment of a wide range of diseases.

He explains the role of the Vagus Nerve, a highly complex superhighway carrying messages between the body and the brain, which controls the reflexes of organ function to maintain the body in homeostasis and balance the sympathetic and parasympathetic nervous systems. Understanding this, previously unmapped, connection between the body’s and the brain’s networks has huge implications for treating inflammatory conditions from rheumatoid arthritis to depression, with millions of patients already being treated with implanted neuromodulating devices.

But, he also highlights the need for maintaining the highest scientific rigour and continuing to research why such treatment is effective in some patients and not all. He points to the need for larger clinical trials to understand the effectiveness of vagal nerve stimulation (VNS) in implanted devices and particularly in the less-regulated ear-based devices. He wants to arm patients with the information to enable them to self-advocate and explore the possibilities of using the healing power of the Vagus Nerve to replace anti-inflammatory drugs, with the potential to slow disease progression and accelerate healing.

 

Scientific paper references:

Sheep on a treadmill, J.Shanks 2023

The Inflammatory Reflex, K.Tracey 2002

FDA approval of VNS in Rheumatoid Arthritis 2025

Auricular Vagus Neuromodulation, review 2021

 

Books:

The Great Nerve

The Inflamed Mind

 

Make Visible

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