Make Visible: ME/CFS, Long Covid, POTS, EDS, Fibro & MCAS Explored20 Mar

#30 Navigating medical appointments with Dr Alba Azola

STRATEGIES: How do you navigate medical appointments when you’re living with a complex chronic illness?

Too often, patients with energy-limiting conditions are told there’s “nothing to be done.” Many are dismissed as anxious, not believed, and left without the care they need, across healthcare systems worldwide.

In this episode, we push back against that narrative.

We’re joined by Dr. Alba Azola, rehabilitation physician and lead of the ME/CFS and related disorders program at Johns Hopkins University. Through her work, she has helped many patients with complex chronic illnesses regain function and reduce symptoms, challenging the belief that these conditions are untreatable.

Dr. Azola shares a hopeful, practical approach: one that focuses on managing symptoms, addressing co-morbidities, and using targeted strategies to reduce pain and improve daily function.

She also discusses the importance of spreading knowledge from experienced, compassionate clinicians, and how this can begin to shift the medical landscape. As part of a multidisciplinary team, she contributed to the PM&R Compendium Statement, a clinical guide supporting physicians in treating Long Covid and related conditions, including POTS, MCAS, dysautonomia, cognitive dysfunction, and orthostatic intolerance.

Hosts Gez Medinger and Emily Kate Stephens break down key insights from the PM&R Compendium Statement, alongside guidance from the Bateman Horne Clinical Care Guide and other leading resources, offering a more structured approach to care.

In this conversation, they explore:

How to access the medical care you need
How to prepare effectively for appointments
The value of keeping a symptom diary
Communicating with your GP or primary care physician
Using pacing strategies and data tools (like Visible)
Building confidence in self-advocacy
Understanding the treatment you deserve

Resources & References:

PM&R Compendium Statement

Bateman Horne Clinical Care Guide

PNAS Patient Survey

DHS ME/CFS Delivery Plan

NICE Clinical Knowledge Summary ME/CFS

NICE Rapid Guideline for Managing Long Covid

Royal College of GPs Long Covid Advice and Resources for Long Covid

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Episoder(41)

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#39 ME/CFS & EDS bedbound for 8 years - Learning to Live Again with Lizzie and Amy Mooney

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STRATEGIES: Physical therapy tools to reduce crashes and improve quality of life for POTS, Post-Exertional Malaise (PEM), EDS, MCAS, and infection-associated chronic conditions such as ME/CFS and Long...

10 Jul 59min

#37 ME/CFS breakthroughs: are treatments getting closer? With Action For ME, NIH, CODA, Bateman Horne Center &

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26 Jun 59min

#36 My daughter’s Long Covid changed how I practice medicine with Dr Binita Kane

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13 Jun 58min

#35 Vagus nerve stimulation for chronic illness and better health with Dr Elisabetta Burchi

SCIENCE: What if a small, non-invasive device could help regulate your nervous system, reduce inflammation, improve cognitive function, and support recovery from chronic illness? Dr Elisabetta Burchi,...

29 Mai 1h 1min

#34 Fibromyalgia and chronic pain management with Ryan Bourdo, Physical Therapist

STRATEGIES: Physical rehabilitation for chronic pain conditions. If you live with fibromyalgia, ME/CFS, EDS or chronic pain, you've likely heard that exercise may help. You've also probably learned, t...

15 Mai 55min

#33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes

STORIES: Undiagnosed Hypermobile Ehlers-Danlos Syndrome (hEDS) | Chronic Pain, Diagnosis & Living with Complex Chronic Illness For 23 years, Dr Lucy Foulkes has lived with chronic pain, migraines, end...

1 Mai 1h 13min