Romandie next please 🙏

I’m so angry at how shitty the world treats pwME. How many of us die for nothing to change. The pain that happens in circles without end. We’re treated like dogs begging for scraps.

It’s telling that it’s mainly cis, straight, able-bodied people crying, “How dare someone lose their life over politics!” That reaction shows they’ve never had skin in the game. For them, politics is abstract. For the rest of us, politics is survival—how we navigate the world just to stay alive.

One day, hopefully in the not too distant future, I hope we can write the same about #ME/CFS.

(US) "Keeping ME/CFS in the Fight on Capitol Hill" solvecfs.org/keeping-me-c... September 11 update from the Solve ME/CFS Initiative @solveme.bsky.social . At the end it lists 2 ways you can help. #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

UK PwME Advocacy Alert: meassociation.org.uk/2025/09/ask-...

New: English-language version of donation page for a Norwegian non-profit foundation dedicated to supporting biomedical research on ME/CFS. Currently looking for funding for important drug trial [Daratumumab] by respected research team www.me-foreningen.no/om-oss/stott... #MEcfs #PwME #CFS

A bit of the grass is greener effect but ME/CFS can really make you realise how much you enjoyed things that at the time you may have seen more as boring or a chore. Like I miss cooking so much I wish I could cook. I wanna try new recipes and always taste different stuff.

Artist spotlight: @berlin-buyers-club.bsky.social is an international art-activist collective founded by a small team of creatives after COVID made them chronically ill. They spend their limited energy seeking awareness, treatments & justice for #LongCovid, #MECFS & other neuro-immune diseases.

3 yrs ago, I got a text that my best friend was found dead. For 10 yrs she labored to find stable housing. She resorted to the unregulated toxic drug supply to cope w/ the disabling effects of homelessness. Her untimely death was due to a series of govt policy choices. She haunts me. I miss her.

Big wins for ME/CFS in the Senate’s 2025 appropriations bills (via @solveme.bsky.social): * $5.4M for CDC ME/CFS program * NIH directed to implement ME/CFS Research Roadmap * Eligibility for $370M in CDMRP funding Next step: The House. Speak up: solvecfs.quorum.us/campaign/136...

I think it’s time to shave my shoulder blade length hair. No point in having hair like that when I can’t clean it so its all tangled and nasty. I hope I’ll improve to the point I can rock long hair, before male pattern baldness shows up ;)

The problems with ME/CFS aren’t just an exception in medicine. They pervade much of it. Common knowledge, can be, and often is, wrong. As a recent example, “The brain rewires after amputation”, written in every neurology textbook. This informed care for post-amputation patients. (1/2)

Today we’re playing the “Did I forget to take every single one of my pills today or is that tomorrow’s pill box?” game. Sponsored by ME/CFS Cognitive fuckery (TM)

#MECFS #LongCOVID

Hmmm ‘[some argue]..the BPS model..has been manipulated to serve a neoliberal agenda to reduce state health & social expenditure, increase corporate profits,& protect the market & interests of the privileged at the expense of chronically ill & disabled people..’ www.tandfonline.com/doi/full/10....

I recently saw a person with v. severe ME/CFS write “Am I the only one here who feels at a level of disability so extreme that even the most severe descriptions l've read don't really capture it?” That is an excellent representation of the double marginalisation faced by the most severe. (1/2)

I think we like the comforting notion that journals know what they're doing. That there's a natural path we can follow to do science right, and that the "authorities" and "institutions" are following that, and that everything is working fine. Sorry guys, but that ain't true.

I’m so sick of being so sick.

I’d rather have a life sentence in a maximum security US prison, than have very Severe ME/CFS.

"The greater the need, the fewer interventions one receives. The more the illness restricts your daily life, the less one is believed. We see a severity paradox, where injustice escalates fast": Via @wamesmecfs.bsky.social www.thereforme.uk/p/the-tiger-...

Very good chapter about Long COVID and Stigma “Work was another matter. I quickly learned that ‘recovery’ was the narrative required there.” “Many people seem to simply want to forget, to move on. What, then, of those who have long COVID who may not be able to move on?”

Notice the Spike Up in COVID. One way COVID-caused deaths were undercounted is that COVID caused complications were attributed to other causes, ie. here, cardiovascular. (ie. not everyone gets tested)

1) There's a new document with care advice for patients with (very) severe ME/CFS. It was published by the Austrian Society for ME/CFS and the Center for Public Health at the Medical University of Vienna.

In criticising DecodeME. The usual psychologisers, Paul Garner, Alan Carson, Simon Wessely, have all focused on one argument. They say: “Genetic associations are also found in depression”. As if that makes finding them in ME/CFS meaningless. 🧵

Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt. Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them. 1/4

Waldmeer (translated): “Do you know who's mostly missing from studies on ME/CFS? Those who are severely and extremely affected. They are further marginalized and rendered invisible by the way research is conducted. We finally need science that focuses on those who need help the most! #SevereMEDay”

I no longer mention Long Covid in my medical appointments as, if I do, everything gets written off as anxiety

Very Severe ME/CFS: Trapped, lying, on a thin layer of ice, with a bag over your head. Every time you try shuffle about, to try get the bag off, or sit up, you can hear the ice crack. And you know, if it breaks, it’s over for you.

On Severe ME day this year, I am preparing to move into an accessible council bungalow that I am very lucky to have gotten but would never have needed were it not for the neglect and gaslighting that caused my deterioration from 'mild' ME/CFS.

another thing that bothers me is when people say talking online doesn't do anything. you know where wars begin? they start with information. stories. propaganda. normalization. the internet isn't separate from that... it is the battlefield now. and it lets people see through lies faster.

The Disability Justice Initiative at @americanprogress.bsky.social is collecting stories from disabled voters about voting access nationwide. Sign up to share your story here! Reposts appreciated. docs.google.com/forms/d/e/1F...

1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome. The Manhattan plot below shows the genes and chromosomes involved. Let’s unpack the results 🧵

“DecodeME also looked at genetic signals associated with depression and anxiety that were near the genetic signals found for ME/CFS, and found that neither involved the same causal variants as ME/CFS” www.decodeme.org.uk/x-marks-the-... where ME/CFS biology can be discovered - DecodeME

Too much disability history and theory is written by people for whom disability supersedes impairment. I want histories written by the severely disabled - the people who don’t end up in academia

#DecodeME has just blogged about its results: www.decodeme.org.uk/x-marks-the-...

Donation link to make this happen. Money is needed to apply for grants and start the research. www.s4me.info/threads/dona...

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

For people with severe #ME, even speaking can risk post-exertional mailaise, and they often need carers to speak for them. #SevereMEWeek

A coalition of 30+ NGOs in the state of Salzburg in Austria (including the local Amnesty international branch), has called the situation for people with ME/CFS and Long COVID, a “human rights desert”.

Understanding severe ME by the world ME alliance “Severe and very severe ME/CFS represents one of the most profound states of disability found in medicine.” – @batemanhornecenter.bsky.social , USA worldmealliance.org/what-is-me/s... #ME/Cfs #pwME #SevereME #SevereMEDay #ICDG93.3 #ICDG93.32

1) We often see statements that 50% of Long Covid patients meet ME/CFS criteria. This is mainly based on studies by the Scheibenbogen group (Kedor et al. 2022), but this sample was pre-selected: these LC patients already suffered from moderate fatigue and exertion intolerance.

#MEcfs @decodemestudy.bsky.social: "We plan to send you an email with [initial DNA findings] on [6 August]...We're letting you know the timing in advance so you can pace yourself if needed." This is unbelievably exciting, & how lovely that our energy levels/PEM are considered by the research group!

Hello 👋 WE NEED YOU 😊 bei unseren Protesten zum Severe ME/CFS Awareness Day 🪧 Weil viele betroffene Menschen zu krank sind, um selbst für ihre Rechte zu demonstrieren, brauchen wir DICH, 🙏🏻 deine Freund*innen, deine Bekannten…damit wir am 08.08. und 09.08. ganz ganz viele auf der Straße sind. 🪧🪧🪧

A history that is just as much part of the present and the foreseeable future. I always see this framed as a historical thing. It's literally worse than it's ever been, psychosomatic ideology has never been more influential & harmful than today. Impunity is the main reason. No accountability.

Even when they admit psychology doesn’t cause ME, we’re still sent to the psychologist before the bare minimum, like accommodations, symptomatic relief, or disability payments. Rather than change the system to support us, they send us to psychiatrists to teach us how to cope with its consequences.

1) Hilda Bastian wrote a new article on the Cochrane review for ME/CFS. "There are many people who care about the harm this outdated review can do, and won’t let it go – myself included." "Not retiring influential out-of-date reviews is a ticking time bomb."

This is Isla at age 8. She died at age 18 with severe ME/CFS. Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.

PLEASE HELP ME ESCAPE! Share, quote, comment, like, retweet #Housing #ChronicIllness #MECFS #SevereME #LongCovid #Abuse #Neglect #MutualAid #Narcissist #Psychopath #ChronicPain