🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 27 Jul - 2 Aug 2026

The issue of what it means to recover from chronic illness has actually always been simple and straightforward: no longer ill. But because medicine has systematically refused to do the work to improve on those outcomes, they pretend that it's a complex idea with no right answer. Won't, not can't.

andrew@teachrprecarity.bsky.social · 3d ago

"Seven years into this pandemic, however, a critical question remains largely underexplored: what does it mean to be recovered from long covid?" #covid #LongCovid #pandemic #PublicHealthCrisis www.bmj.com/content/393/...

⏱️REMINDER: This ME/CFS research call is currently open to applications. It has a budget of € 120,000-180,000 per project, provided by the WE&ME Foundation. The first stage only requires a short proposals (ca. 4 pages). The deadline is 25 August.

ME/CFS Science@mecfsscience.org · 2mo ago

1) The WE&ME Foundation has launched a major international call for ME/CFS research in collaboration with the Science for ME forum. It aims to fund 7 projects with a budget of €120,000-180,000 per project. The stage 1, short proposal, deadline is 25 August 2026.

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 20 - 26 Jul 2026

1) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.

Cell and tissue enrichment in ME/CFS - ME/CFS Science

By matching DNA results with gene expression databases researchers can determine the tissues and cellContinue readingCell and tissue enrichment in ME/CFS

mecfsscience.org

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 13 - 19 Jul 2026

LLMs reflect their source material. This is all in the source material, however much propaganda there might be to the contrary. Ironically, it's much easier to fix this in the models than in the source material or institutions. Human nature never changes without technology changing its conditions.

Science Magazine@science.org · 3w ago

Researchers found that popular large language models often produce stigmatizing statements when provided with information about a person’s health. The findings add to growing evidence that #AI models can help perpetuate—rather than eliminate—harmful stereotypes. Learn more: https://scim.ag/4aGoUyS

Excellent letter from Dr Mark Harper and the Cambridge ME and Long Covid Support group & co-sigs. It is a response to the RCPsych letter to our open letter signed by 58 orgs. It primarily deals with their claim as experts in the BPS model & well worth a read.

cbme-mark.bsky.social@cbme-mark.bsky.social · 3w ago

Three ME support groups have written an open letter to the Royal College of Psychiatrists challenging its defence of last month’s Congress session on ME and Long Covid. A vague “biopsychosocial” framework cannot rescue treatments the evidence has already rejected.

The entire concept of "pragmatic" clinical trials has to stop, it serves no real purpose and never delivers results. Across decades and thousands of such trials, not a single useful solution has ever been produced. Or at the very least they need to be made 10-100x cheaper, faster and better.

ME/CFS Science@mecfsscience.org · 4w ago

1) 🇬🇧 The results of the big STIMULATE-ICP study are in. It tested three repurposed drugs in hundreds of Long Covid patients: - colchicine: an anti-inflammatory - famotidine and loratadine: antihistamines - rivaroxaban: an anticoagulant Sadly, all three had poor results.

3) The WE&ME Foundation launched an ambitious grant program that was co-developed by members of the Science for ME forum. It aims to fund 7 projects with a budget of €120,000-180,000 per project. bsky.app/profile/mecf...

ME/CFS Science@mecfsscience.org · 2mo ago

1) The WE&ME Foundation has launched a major international call for ME/CFS research in collaboration with the Science for ME forum. It aims to fund 7 projects with a budget of €120,000-180,000 per project. The stage 1, short proposal, deadline is 25 August 2026.

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 29 Jun - 5 Jul 2026

The weirdest thing about so-called "evidence-based medicine" is that evidence is entirely irrelevant to it, straight up does not matter. This treatment model has always been a failure, doesn't have reliable evidence for it. Doesn't matter, has been the default for decades, forced onto millions.

ME/CFS Science@mecfsscience.org · last mo.

9) This is probably the main conclusion of the trial: multidisciplinary rehabilitation, even when when based on pacing designed for patients with post-exertional malaise, often doesn't work, it doesn't improve physical function and its value should not be overstated.

Funniest thing about this is how almost everyone is oblivious at how human-like this actually makes AI. It's exactly like us. This is standard human behavior, accepted and common in every walk of life. Even professionals do that. Pretending otherwise is pure cope.

The Conversation UK@uk.theconversation.com · last mo.

AI is learning to lie — and then gaslight you about it. Researchers found that when AI models are gently nudged with false information, they’ll often invent details, defend the falsehood and stick to it even after being corrected. tcnv.link/oWfqz9R

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 22 - 28 Jun 2026

Almost all bigotry is taught, it's usually not natural, it needs to be enforced and reinforced again and again. Obviously it shouldn't be taught at medical school. It is, specifically against disabled people. Why? And also WTF?

Adam@abrokenbattery.bsky.social · 2mo ago

“I’m ashamed to say that my very first reaction to that diagnosis was, oh my God, I don’t want her to have that because that was a label, a stigma that you are taught in medicine.” @binitakane.bsky.social speaking about her daughter’s diagnosis of #MECFS following Covid.

It's wild how policies of intentional negligence and discrimination lead to negligence and discrimination. This is not a side-effect, this is the main goal. This is technically success as far as what the goal of those policies are about.

ME/CFS Science@mecfsscience.org · 2mo ago

1) This review found that people with ME/CFS are profoundly impacted by stigmatisation and that it also affects their social circles, such as friends and family. The most frequently identified issue was stigmatising experiences by healthcare professionals and physicians.

If you think that medical research is expensive, wait until you find out how expensive denial is. Literally paying more for worse outcomes for everyone but if you never see the bill it doesn't feel real. Leeroy Jenkins-ass policy.

ME/CFS Research Foundation@mecfsresearch.bsky.social · 2mo ago

2025 update: 318.8bn € in cumulative costs from Long COVID and ME/CFS in Germany since 2020. More than 60 % of Germany's entire federal budget. Almost three times the defense budget. And the sum grows every year. Only research breaks this. Report: https://t.ly/QeMez

My first post about that Wired piece: virology.ws/2026/06/09/t...

🧵 of highlighted #MECFS and #LongCovid research papers being discussed this week on the Science for ME forum. 25 - 31 May 2026

We have guest writer Dr Elke Hausmann examining the controversial Levinovitz WIRED article which has sparked significant concern for its portrayal of Long Covid, recovery narratives, and brain retraining approaches. 🎙️Audio available open.substack.com/pub/longcovi...

1) In this interview with David Tuller, Prof. Chris Ponting gave more info about the SequenceME & Long Covid project that received £4.75 million from the UK government. It will measure the whole genome of ME/CFS patients in high resolution so that rare mutations can be found.

All of this is a choice, intentional, by design. Stigma isn't the right term, however. This is discrimination. This is a fraction of the harm that psychosomatic ideology inflicts. It destroys lives to fuel egos and enrich the wealthy by denying care to millions. www.nature.com/articles/s41...

Experiences of stigma in children with long COVID - Pediatric Research

Pediatric Research - Experiences of stigma in children with long COVID

nature.com

“I don’t think I can think of another condition that would be treated this way.” Dr Anna Brooks, Liggins Institute. A powerful opening to Zoe Madden-Smith’s award-winning RE:News documentary on #MECFS

Adam@abrokenbattery.bsky.social · 2mo ago

“Waking up, it’s like you’ve been hit by a truck. Everything’s shaking, vibrating internally. My brain feels inflamed, it’s like you’ve got a concussion.” Rhi has had #MEcfs for over 20 years.

"Those who die have health issues" was the main message about all the COVID deaths. All 20M+ of them. Repeated for years. Funny how treating public health as public relations blows back predictably.

Bad Medical Takes@badmedicaltakes.bsky.social · 2mo ago

“This is not a life, it is miserable. So how do I feel? Not even human anymore.” A 36-year-old woman with severe #MECFS confined to bed, on oxygen and a feeding tube, unable to tolerate light, sound or vibrations. Clip from Swiss TV

From early 2020 and since then, thousands of people warned that this should be studied and could be a significant problem. Every single government, and every single national medical research organization dismissed it, insisting they were "not worried about it" and that this would not be a problem.

Eric Topol@erictopol.bsky.social · 2mo ago

The incidence and prevalence of #LongCovid worse than anticipated in the US, with 1 of 6 persons affected, and of these 89% had at least 1 chronic condition requiring management. From 58 hospitals, 4 regions, 457,950 patients. Prevalence increased thru mid 2024. jamanetwork.com/journals/jam...

🧵 of highlighted #MECFS and #LongCovid research papers being discussed this week on the Science for ME forum. 18 - 24 May 2026

I find it quite frankly baffling. Baffling above all how all those preoccupied with social justice (academically, professionally and in other ways), are happy to let these bubbles just pop or float into oblivion.

The lie/myth of deconditioning being a cause of symptoms in ME/CFS has been around for decades, has never had any real evidence for, has been thoroughly debunked, and it's still widely believed and asserted. They call this "holistic" evidence-based medicine. 🙄🤦‍♂️

Adam@abrokenbattery.bsky.social · 2mo ago

“The injustice of it, I couldn’t believe it.” Former Team GB rower @oonaghcousins.bsky.social talking about the #MECFS “scandal” where patients were told they were deconditioned and needed Graded Exercise and CBT. It is the “opposite of what they needed” and that legacy still runs “super deep”.

“The injustice of it, I couldn’t believe it.” Former Team GB rower @oonaghcousins.bsky.social talking about the #MECFS “scandal” where patients were told they were deconditioned and needed Graded Exercise and CBT. It is the “opposite of what they needed” and that legacy still runs “super deep”.