Make Visible: Complex Chronic Illness Explored

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

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Oct 31, 2025

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

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INSIGHT

Why Upright Posture Causes Fatigue

Orthostatic intolerance means poor tolerance of upright posture causing brain hypoperfusion and sympathetic activation.
Causes include excessive blood pooling, low blood volume, and exaggerated catecholamine responses.

INSIGHT

Hypermobility Is A Risk Factor

Ehlers-Danlos (EDS) and joint hypermobility frequently co-occur with ME/CFS and orthostatic intolerance.
Genetic hypermobility appears in childhood and may require a second hit like infection to trigger illness.

ADVICE

Use History And A 10-Minute Stand Test

Take a detailed history and map daily symptoms to identify treatable comorbidities.
Perform a 10-minute passive standing test to provoke orthostatic symptoms and guide treatment.

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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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