Winston Blick Profile picture
Technology, design, education | 6-year #MECFS post-viral #longhauler | ally of #LongCOVID | quoter of @mecfsquotes | previously, 🚵🏼‍♂️ 🏂 🏃🏻🏕️ 📖
#LongHauler for 24 Years - #MECFS G93.3 Profile picture 1 added to My Authors
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.

👉 wearebodypolitic.com/bodytype/2021/… by @itsbodypolitic @fi_lowenstein @ItsAngInLA The organization Body Politic has written an Open Letter to 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-… “We are writing today to urge the NIH to prioritize fundin
Apr 27, 2021 10 tweets 9 min read
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: Dr. Nancy Klimas quote: “Th... 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. Dr. Nancy Klimas quote: “Th...
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). According to Dr. Anthony Komaroff: “It is not surprising t 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. According to Dr. Anthony Komaroff: “It's my bet that Long