As hard as it is to understand exertion intolerance in ME/CFS, it takes another full leap to grasp that over-exertion can reduce the threshold of what qualifies as exertion. A reduced baseline is not just feeling worse even in your best hours, or developing new always-present symptoms. It's also finding that ever-smaller efforts trigger heightened illness and risk further debility.

“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.”

#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…)

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.

👉 wearebodypolitic.com/bodytype/2021/… by @itsbodypolitic @fi_lowenstein @ItsAngInLA In December, Congress provided $1.15 billion over 4 years for @NIH to “support research into the prolonged health consequences of #COVID19”. With many newcomers to the field there’s cause for concern that experienced #MECFS researchers may be overlooked. nih.gov/about-nih/who-…

Some highlights from the recent Nancy Klimas webinar hosted by @itsbodypolitic on #LongCOVID #MECFS (moderated by the wonderful @AlisonSbrana)

➕ For some intervention ideas from Dr. Klimas see this excellent thread by @Be_Kinderr:

https://twitter.com/be_kinderr/status/1382102000159055873?s=21

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.

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.