#MECFS post-viral #longhauler | ally of #LongCOVID | quoter of @mecfsquotes | previously, 🚵🏼♂️ 🏂 🏃🏻🏕️ 📖
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Sep 15, 2022 • 5 tweets • 2 min read
“Five people with severe autoimmune disease have become the first in the world to receive a groundbreaking therapy that uses genetically altered cells to drive the illness into remission.” theguardian.com/science/2022/s…@guardian
“In the latest work, doctors took T-cells from the lupus patients and modified them so that, on re-infusion, they attacked the patients’ B cells. In lupus, B cells churn out autoantibodies, which instead of defending against invading pathogens, attack healthy tissues instead.”
Aug 12, 2021 • 14 tweets • 4 min read
#MECFS may well be *the* lowest funded condition, in terms of aggregate disease burden, of any at the U.S. NIH. Funding is even worse in the UK and other countries.
Why?
🧵
Graphic adapted from content.iospress.com/articles/workw…, brilliant work by @ArthurMirin@marydimmock
Here are 10 factors that have led this devastating and common condition to be so badly neglected, all of which compound and mutually reinforce one another…
(Seeking additional ideas and feedback from #MECFS community for communicating to lay public…)
Apr 29, 2021 • 10 tweets • 13 min read
Body Politic has published an important open letter to the @NIH@NIHDirector urging the prioritization of #LongCOVID research that builds off prior research into #MECFS and related conditions.
It has been a great disappointment to some psychiatrists that post-viral #MECFS hasn’t turned out to be psychiatric. This hasn’t stopped them from attempting to stake their claim over #LongCovid (or ME/CFS for that matter) to the detriment of biomedical research & patient care.
Apr 11, 2021 • 11 tweets • 8 min read
1/ At a recent @MEActNet briefing, Dr. Anthony Komaroff confirmed his earlier prediction that we had reason to expect some w/ COVID-19 would develop a debilitating chronic fatigue syndrome w/ symptoms similar to post-viral #MECFS (focusing on #LongCovid cases w/o organ damage). 2/ Komaroff alluded to abnormalities found in the brain in #MECFS, referencing theory of chronic low-grade activation of immune system in the brain — requires validation. Called for #LongCovid studies to build off past ME/CFS findings, plus research including both patient groups.