Post

How to get URL link on X (Twitter) App

On the Twitter thread, click on or icon on the bottom
Click again on or Share Via icon
Click on Copy Link to Tweet
Paste it above and click "Unroll Thread"!
More info at Twitter Help

Winston Blick

@winstoncb

Apr 29, 2021 • 10 tweets • 13 min read • Read on X

Scrolly

@NIH

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

@NIH

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-…

#LongCovid and #MECFS have much in common and are increasingly joining forces to drive change that might lead to diagnostics, treatments, and a cure.

Many #LongCOVID #longhaulers meet diagnostic criteria for #MECFS and related disorders like #dysautonomia #MCAS and #POTS.

@ngklimas

As much as we lament lack of funding that has substantially delayed scientific progress in #MECFS, as Dr. Klimas @ngklimas put it, “but by God we've been doing it anyway and there's just a lot of work [to build off of]” over recent decades that may be applicable to #LongCOVID.

We’re used to hearing the framing that #MECFS “remains a mystery”, but in fact much has already been discovered thanks to intrepid researchers and patient-funded research. There are many hot leads to pursue.

@itsbodypolitic

.@itsbodypolitic specifically cites the work of Ron Davis (cc @JanetDafoe) Nancy Klimas @ngklimas, Amy Proal @microbeminded2, Mike VanElzakker
@MBVanElzakker, Peter Rowe, Jarred Younger, Maureen Hanson @DrMaureenHanson, Alfred Gamboa, and foundations @4Workwell and @PolyBioRF.

@NINDSdirector

Despite enormous burden on patients and society, chronic post-viral conditions like #MECFS have been neglected for decades and we must now make up for lost time. (cc @NINDSdirector)

So for the sake of #LongCOVID, #MECFS and related conditions we cannot waste our biggest chance at a breakthrough reinventing the wheel.

@mecfsquotes

Looking ahead, #LongCOVID #MECFS and related conditions must band together to drive change. 💪

🤝 #POTS #Fibromyalgia #Dysautonomia #MCAS #Lyme+ #GWI #EDS

👉 Read the whole open letter: wearebodypolitic.com/bodytype/2021/…

👉 For all quotes in this series, see @mecfsquotes.

• • •

Missing some Tweet in this thread? You can try to force a refresh

This Thread may be Removed Anytime!

Twitter may remove this content at anytime! Save it as PDF for later use!

More from @winstoncb

Winston Blick

@winstoncb

Oct 6, 2024

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.

This vicious cycle of exertion intolerance is what makes ME/CFS such a straitjacket, not just on the scale of hours and days, but months and years — the "annihilation of possibility" per @edyong209.

Read 5 tweets

Winston Blick

@winstoncb

Sep 15, 2022

@guardian

“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.”

“The therapy in effect wiped out the patients’ aberrant B cells and dramatically improved their condition. The disease affected multiple organs… but after the therapy severe symptoms incl. arthritis, fatigue, fibrosis of the heart valves, and lung inflammation all cleared up.”

Read 5 tweets

Winston Blick

@winstoncb

Aug 12, 2021

@ArthurMirin

#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…)

1. Invisible

ME/CFS is capable of leaving those afflicted housebound or bedbound for years... and yet even those with relatively severe cases may *look* just fine!

Read 14 tweets

Winston Blick

@winstoncb

Apr 27, 2021

@itsbodypolitic

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.

Psychological/psychiatric indicators don’t predict who develops post-viral #MECFS; immune response does.

Read 10 tweets

Winston Blick

@winstoncb

Apr 11, 2021

@MEActNet

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.