Our new paper is here: Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID www.nature.com/articles/s43...

Jaime Seltzer - @exceedhergrasp1.bsky.social - doing the work. Showing up and speaking out in Washington, DC. Because people with #MECFS deserve to be treated with dignity. #frailandfurious #MillionsMissing #MEwarrior

There are currently more bills attacking trans youth’s right to play sports across the U.S. than there are trans youth in school sports.

Most memorable quote, "I don't know who to see when the DOJ breaks the law."

Canceled my subscription @wired.com

Shoutout to some excellent German psychologists working on #LongCovid - check out the link for who they are

Remember that the existence of Long Covid and the fact that millions of people worldwide are suffering from it creates an extraordinary dissonance in the minds of a section of the population who wish to believe the falsity that Covid is no longer dangerous, and perhaps never was.

In honor of Julia, too sick to attend. Image 1 sign inspo @ Sunniva Innstrand on IG & David Wojnarowicz. Like HIV/AIDS crisis, neglect of ppl w/ ME is public health failure. Sign petition protect Medicaid c.org/2jXD7kFHMk @meactnet.bsky.social #FrailAndFurious #MillionsMissing #MEawareness26 #pwME

"Long COVID Changed Everything" 'What a mass disabling event revealed about medicine’s limits' By Brittani James, MD www.blog.brittanijamesmd.com/p/long-covid...

health is fragile, recovery is not always linear, and human worth cannot be reduced to consistent productivity. No one knows this better than people with ME/CFS. open.substack.com/pub/brittani...

Advocates from the #MECFS community used to engage with the experts at the CDC. This picture was taken in 2024. @firedbutfighting.bsky.social meet #FrailandFurious

I'm one of the "Frails" in this reel. I have #MECFS. There is no FDA-approved treatment. The CDC has been gutted. Experts fired. And now Medicaid work requirements threaten to take my healthcare. Call me frail but don't you dare take my healthcare.

"What did the media get wrong when they covered the COVID-19 pandemic?" The media failed to report the long term consequences of contracting a virus. Some/many people were going to get sick and never recover. No one understood that better than people with #MECFS. Plz talk to @meactnet.bsky.social

As a person disabled b/c of #MECFS I am beyond grateful for the medical professionals & researchers who not only acknowledge the disease but provide resources to educate others! Thank you @grachstephanie.bsky.social and @exceedhergrasp1.bsky.social of @meactnet.bsky.social ❗

For #PwME, Mr. Tuller has had our backs in the most reputable, articulate, academic-but-passionate way for many years. This is the last go-round of funding his work through Berkeley before he retires. #mecfs #myalgicencephalomyelitis #gratefulforthegoodones

Memorials of people who died with extreme fatigue condition show shared themes | EurekAlert! www.eurekalert.org/news-release...

Incredibly exciting! One of my co-authored papers is part of a special edition on infection-associated chronic conditions in the Journal of Clinical Medicine: 🧪🧵 ✨ #POTS, #MECFS and #LongCOVID: Recent Advances and Future Direction Guest Editor(s): Svetlana Blitshteyn. ✨ www.mdpi.com/journal/jcm/...

ME/CFS care has been shaped for far too long by under-recognition, stigma, and outdated assumptions. Building tools that clinicians actually use—tools that reflect what patients experience—requires lived experience leadership at the table from day one.

It’s been 5 yrs today since Rivka Solomon was featured on PBS NewsHour, raising awareness about ME/CFS & Long COVID. Advocates like Rivka have worked tirelessly to bring awareness to people newly diagnosed w/ Long COVID, & related diseases. We are #StillSickStillFighting www.pbs.org/newshour/bri...

It's been three and a half decades since I contracted the flu, probably a virus, that stole my active life. I got sick & never recovered. Today is my M.E. anniversary, my "sickiversary." People with Long COVID are only beginning a journey that for me has lasted 35 years. #millionsmissing

Wonderful reel from Liz Burlingame about having #MECFS, plus a message for people with #LongCOVID. Beautifully done. ❤️ #NEISvoid definitely for sharing. www.instagram.com/reel/DXJ_U_9...

If you are so moved: www.meaction.net/donate

Liz mentions #MEAction and Solve ME, and urges folks to support our orgs. Thank you, Liz. "It is my intention to endure" should be our fighting words.

I completely agree with Marjorie Taylor Greene is a sentence I never thought I would ever write.

Easy action. Only takes a few minutes. State medical boards need to take #MECFS seriously!

Many Long COVID scientists fail to meaningfully draw on the insights of patient-researchers. In our Comment for @thelancetinfdis.bsky.social, we propose a solution: make all Long COVID papers undergo pre-publication patient review. 1/

Atlanta is showing up to say no ICE, no war, No Kings. #NoKings

We’re quickly learning that our checks, balances, and separation of powers were always dependent good faith, and therefore incapable of preventing destruction wrought by the very sort of shameless, arrogant, mad president they were designed to contain.

Did you know that Medicaid isn't called 'Medicaid' everywhere, to the point that ONE out of THREE people who are on Medicaid don't ✨know✨ it? So how can they be incentivized to fight for their healthcare if they don't know it's their healthcare? (Alt in the comments, it's a lot!)

I just signed a @theactionnetwork.bsky.social petition: Protect Medicaid Access for People with ME/CFS and Long COVID. Sign here: actionnetwork.org/petitions/fr...

I’m just gonna keep saying “triple the NIH budget” until it sounds like common sense.

The sane people of the US have been saying the same thing since 2017.

This is really excellent.

In a scathing review, the top US medical journal's editorial board warned that the "destruction that Kennedy has wrought in 1 in office might take generations to repair."

This man is giving me hives. 1. Any drug is unsafe at the wrong dose. Tylenol and Benadryl overdose are both serious and potentially fatal. “Unsafe” is not a meaningful metric here. 2. If you think the average American can correctly self-manage antibiotic use you’ve never worked in healthcare.

At 3:26pm a runner was seen smiling after seeing a French flag at the fire tower. #BM100

Now TWO left: Damian Hall and Sébastien Raichon. #BM100

Fire tower and the conditions the runners are dealing with. Freezing fog and the bone chilling cold these conditions create. The high moisture content and cold conditions wick away and pretence of warmth from even the best gear #bm100

In addition to the rain, fog is rolling in. Now the Barkley is just playing with the runners. #BM100

Three of the five runners from loop 1 have returned to camp. There are still 2 runners on loop 1, 3 runners on loop 2, and 4 runners on loop 3. #BM100

The 2026 Barkley Marathons began with one of the strongest fields ever. The starting field came from 15 Counties as well as 15 States, and included ten women. The course seemed not to care. Over 70% of the field is done. #BM100

“I’ve never protested before - but I just watched 4th & 5th grade kids run away from our own government.” 😕🇺🇸💔 (From @crindivisible.bsky.social )

From ME Action GA’s @erinmarilee.bsky.social on the Barkley fundraiser: “We’re pledging a $1 donation to the Open Medicine Foundation for every loop completed in the race. Every dollar donated moves us one step closer to a cure! Celebrate human endurance with us!” More donation info to come!

Our executive director, Laurie Jones is sending out some love this Valentine's weekend- in the form of refurbished Visible bands! Those of you who won have been notified via email and the first round of bands are on their way! Thank you to Visible! #PwME #StopRestPace

Gotta say, the language of the Barkley is one of my favorite things about following this race❣️ #BM100

Knee Guy has begun loop 2. Five runners are on loop two; 35 runners are on loop 1. #BM100

Two French Guys have finished loop 1 in 10:07:46 and 10:08:10, one of whom stopped to put trash bags over his shoes prior to crossing the creek. 🤦‍♂️ #BM100

The documentary is about a quirky, mysterious endurance event in the foothills of Tennessee. You will walk away from this event a superfan of Barkley and fired up about the challenges we can conquer. Save the date and RSVP here: www.eventbrite.com/e/mecfs-bark... (3/3)