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Long Covid relapse advice

Post-COVID Recovery & COVID-19 | Last Active: Dec 21 1:55pm | Replies (10)

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It’s very frustrating when doctors give conflicting directions.
Post-exertional malaise, Chronic Fatigue Syndrome (CFS) and Exercise Intolerance are very real.

I showed my neurologist some of my research (below) and she referred to Allergy and Immunology, who is now referring me to a Immunology Specialist. I started getting a gut feeling that my root cause was "cell level". Also, I learned Immunology does a different set of Lab Blood Work.

I feel the following are related to what you are going through -

Jarred Younger PhD – University of Alabama at Birmingham
070 - Why ME/CFS "fatigue" is not normal fatigue


066 - New paper: The top treatments for ME/CFS and Long-COVID

Paper - Patient-reported treatment outcomes in ME/CFS and long COVID (Very informative Charts)
https://pubmed.ncbi.nlm.nih.gov/40627388/
(Check out his other videos for areas of interest)

IMPORTANT - I share this with my doctors to help them understand what I’m going through.
UT Health Austin Michael Brode, MD Dec 20, 2023
Long COVID Treatment Explained: A Comprehensive Patient Guide


Understanding Long COVID: What Every Patient Needs to Know

I found Akiko Iwasaki PhD, Yale University - School of Medicine - Sterling Professor of Immunobiology and Professor of Dermatology and of Molecular, Cellular, and Developmental Biology and Epidemiology (Microbial Diseases) https://medicine.yale.edu/profile/akiko-iwasaki/
Akiko gives me hope for the future.
Paper -Immune markers of post-vaccination syndrome indicate future research directions
https://news.yale.edu/2025/02/19/immune-markers-post-vaccination-syndrome-indicate-future-research-directions
“Some of the most common chronic symptoms of PVS include exercise intolerance, excessive fatigue, brain fog, insomnia, and dizziness.” Many wonderful links inside this paper.

I recently found Polybio.
“The Long COVID Research Consortium has established a comprehensive research program on Long COVID disease mechanisms, with a focus on viral reservoir. The program includes scientists and clinicians from institutions including Harvard Medical School, University of California San Francisco, the J. Craig Venter Institute, Johns Hopkins, University of Pennsylvania, the Icahn School of Medicine at Mount Sinai, Cardiff University and Yale University.”

They have a "consortium-project-explorer" (Screenshot below c-p-e 1), click on body part and it shows links where you can click to see full study.
https://polybio.org/consortium-project-explorer/
Note: First time - walks thru the Intro to Polybio and "how to use" explorer, later you can Skip Intro

It's been a journey, Best wishes on your journey
🍀

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