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
Make Visible
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