I’ve just finished my first ME/CFS video essay. It concerns what I’ve learned about hope over the course of my illness. There’s a link to a text version of the essay in the video description if that’s more accessible.

youtu.be/jMiVAAzo4p0?...

another day, another person with severe ME being mistreated in an NHS hospital 💔. please sign her petition for appropriate care!
chng.it/JfzLXdZzzH

Plz sign and share this petition to help Dill, a severely ill pwME in UK hospital. #MECFS #LongCovid

www.change.org/p/the-nhs-mu...

in a fairer world, there would be hell to pay for the torture and human rights abuses being visited on this poor man.

this article contains a link to his fundraiser. please donate/read/share ❤️‍🩹

Very Severe ME is a relentless suppression of everything it means to be human, a denial of nearly every one of the most basic instincts and desires.

And where even the capacity to grieve or process that incomprehensible loss is taken away.

The subject of this article is a friend of mine. His circumstances are utterly heartbreaking and yet, somehow, he remains a warm and kind young man. It would mean something to me if you read his story.

"The Severe....recognize the depths of the pit of horror that the Very Severe may find themselves stuck in...yet by leaning over to lend a hand, we risk falling further into the quicksand ourselves."

Vital op-ed by Sam Pearce in @thesicktimes.bsky.social

thesicktimes.org/2025/04/04/a...

you have ME and something needs explaining.

you begin to talk. you know the final destination—your understanding, shared—but your working memory is too shot to devise and hold in it a route there.

This tweet is about a friend of mine with very severe ME ❤️‍🩹. If you have any ideas, please let me know! #pwme #MECFS

Some useful Surveillance Self Defense links for people who want to lock their shit down right now:

Attending a protest: ssd.eff.org/module/atten...

How to Use Signal: ssd.eff.org/module/how-t...

Security starter pack: ssd.eff.org/playlist/wan...

as someone who became homebound at 13, it’s hard to relate when pwME who got sick in their 20s lament “these were supposed to be my fun years”

i feel confused: “supposed to”? then i remember ppl didn’t nesc spend their teenage years having “you’re owed nothing in life” curbstomped into them

Hierarchies other than class are actually real. People don’t like this fact because “the 1%” is a more appealing fraction for “people who have an interest in exploiting others” compared to idk the 50% or 80% or whatever the more realistic fraction is for people benefiting from *someone’s* oppression

Science affords us the luxury of forgetting the impact of infectious diseases
- In the 1st half of the 19th century 40-50% of children in US did not make it past the age of 5
- TB killed 1 in 7 people in US and Europe
- smallpox killed 80% of infected children
theconversation.com/infectious-d...

i wish everyone who comments on ME clinical trials would internalize this image. the blue line is the health scores of the placebo group in the rituximab phase III trial

it shows that not only did rituximab not work, but pwME on a placebo report a modest benefit on some health surveys over time

Don't believe I've ever read a more singularly captivating piece about how easy it is to become homeless in America, and what that experience is like. www.esquire.com/news-politic...

1) Which ME/CFS studies did the National Institutes of Health (NIH) fund in 2024?

We published a new blog post that briefly describes all projects.
mecfsskeptic.com/nih...