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Richard Vallée

@richardvallee.bsky.social
1.6K followers 612 following 1.2K posts

I play language. Mostly irreverent. Debugger. AI. Global warming. Integrity. Health. Science. Chronically ill punk rocker. I think about the future a lot.

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Richard Vallée @richardvallee.bsky.social · 01/10/2026
It's sad that we can't trust anything they say about it. People suffering from chronic illness have been betrayed so perfectly for so long that weak statements like this ring completely hollow. Until something is actually done to correct the blatant denial of justice, words mean nothing.
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Alem Matthees @alemmatthees.bsky.social · 30/09/2026
Those with #MECFS who do *not* "look" fine are often treated like garbage too, because more ill often means more to blame. Many doctors who believe ME/CFS exists only accept a certain degree of disability, beyond that is then assumed must be due to personal issues rather than the illness itself.
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Richard Vallée @richardvallee.bsky.social · 30/09/2026
The enshittification of academia in a nutshell: an open label trial with subjective assessment of the very model of care that has been failing the whole time, which they obviously know but pretend not to, is presented as double-blinded when it's not even single-blinded.
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Richard Vallée @richardvallee.bsky.social · 29/09/2026
It would be great if there were at least as much concern about human hallucinations as there have been about AI hallucinations. Especially because human hallucinations are clearly getting more frequent and influential over time, while AI hallucinations are not.
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Science for ME (S4ME) @s4me.info · 28/09/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 21 - 27 Sep 2026
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Richard Vallée @richardvallee.bsky.social · 27/09/2026
It's the worst it's ever been. And that's saying a lot. It might be one of the least popular issues out there, with the public and with medical professionals. Literally less popular than Nazis. Medicine* isn't going to help with this, folks. Not gonna happen.
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Adam @abrokenbattery.bsky.social · 27/09/2026
“It has sent many people from having mild or moderate cases to severe #MECFS… it has turned people housebound, bedbound. It has completely destroyed their lives.” @georgemonbiot.bsky.social on the harm caused by graded exercise therapy (GET) for #MECFS.
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Richard Vallée @richardvallee.bsky.social · 26/09/2026
There is really an immense failure at the top of the health care industry. No strategic thinking. Essentially wasting billions in funds to sacrifice tens of millions of lives and the net result is trillions in resulting losses and moral degeneracy. It was always cheaper to work at solving it.
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Alem Matthees @alemmatthees.bsky.social · 25/09/2026
The most insane thing about this #MECFS scandal, beyond all the suffering and neglect, is that it costs hundreds of times more in economic losses every year than it would to fund the research that could eventually decrease this burden. The degree of short-sightedness involved is astounding.
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Laura @laurajerramp.bsky.social · 24/09/2026
youtu.be/RiwX9Y0NbiQ?...
youtu.be
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Richard Vallée @richardvallee.bsky.social · 24/09/2026
The most important detail about this scandal is that it's 100% a choice. The responsibility of the medical profession is on the same order as what the tobacco industry did about the harms of its products. All of this is a choice. They know. We keep telling them. They don't care. Not one bit.
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Richard Vallée @richardvallee.bsky.social · 21/09/2026
700+ trials and it's almost all garbage. The lack of progress is a direct consequence of a complete lack of ambition and motivation. The systems and institutions don't care, make no effort at it. No one's responsible. Zero progress made. Easy to find the problems here, they're excessive.
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Minestrone Monster @minstronemonster.bsky.social · 21/09/2026
A harrowing thread of responses here demonstrating not just a failure to treat patients with ME, but an institutional insistence on persecuting, abusing, gaslighting and discrediting them. People have died. People will die. Lives have been destroyed. The scale of the injustice is staggering.
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Science for ME (S4ME) @s4me.info · 20/09/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 14 - 20 Sep 2026
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Science for ME (S4ME) @s4me.info · 13/09/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 7 - 13 Sep 2026
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Richard Vallée @richardvallee.bsky.social · 11/09/2026
Someone called this mediocre man Professor Catastrophe, but he also deserves the title of Professor Failure. It's seriously hard to be this wrong about anything, and he's managed to make a career out of it. He is highly respected by his peers, not despite his failures, but for them.
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me with ME 🇬🇧 📷 🍂 ❤️☮️ 🇺🇦🇪🇺🇨🇦 @me-with-me.bsky.social · 09/09/2026
And the fact they tried so hard to hide and not release the data also tells us a lot. They new they had lied, they new they were in fact causing harm but continued to push their lies to try and make their unfounded opinions right. And of course to keep making money out of it.
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Tom Kindlon @tomkindlon.bsky.social · 09/09/2026
10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS
 Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
Carolyn E Wilshire  1 , Tom Kindlon  2 , Robert Courtney  3 , Alem Matthees  4 , David Tuller  5 , Keith Geraghty  6 , Bruce Levin  7
Affiliations Expand

    PMID: 29562932 PMCID: PMC5863477 DOI: 10.1186/s40359-018-0218-3 

Abstract

Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence.

Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole.
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Richard Vallée @richardvallee.bsky.social · 09/09/2026
Psychosomatic ideology is basically NFTs applied to health and almost no one has the courage to admit and point out that it's blatantly evil and destructive. It's garbage like this that makes it necessary for AI to take over. The absolute peak banality of evil.
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Richard Vallée @richardvallee.bsky.social · 07/09/2026
No one is more excluded from medicine than those of us suffering from discriminated chronic illnesses like ME/CFS, Long Covid, etc. Our exclusion is literally standard practice, fully intentional and considered "good". Physicians hate and mock us. We don't have the luxury to be against vaccines.
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Science for ME (S4ME) @s4me.info · 06/09/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 31 Aug - 6 Sep 2026
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Emma Sicantyred @dizzymarlcliffe.bsky.social · 06/09/2026
The whole thread is essential reading, but for me it's this final point that cannot be stressed enough. 'Support' is not support when it just makes you more ill.
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A.R. Moxon @juliusgoat.bsky.social · 06/09/2026
Our society's unfathomable cruelty to homeless people is not just morally unjustifiable, but more expensive than housing people would be. Cruelty against the homeless is an unaffordable luxury. Abandoning homeless people to avoid offending the Protestant work ethic is an unaffordable luxury.
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Richard Vallée @richardvallee.bsky.social · 04/09/2026
To put into perspective how little has been done, about $2B of research on Long Covid has yielded less than the institutionally-sabotaged research on ME/CFS did with crumbs. Not a single useful thing has come out of LC research yet. Not even a single bit, tt has effectively been entirely wasted.
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Science for ME (S4ME) @s4me.info · 30/08/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 24 - 30 Aug 2026
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ME/CFS Science @mecfsscience.org · 30/08/2026
1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau. It's an recognition of his outstanding contribution to society, a very high honour.
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Adam @abrokenbattery.bsky.social · 28/08/2026
These graphs show the scale of the neglect. In the 20 years before the pandemic, Sky News found just 2,007 new scientific publications on ME/CFS compared with nearly 45,000 on psoriasis and 114,000 on Parkinson’s.
GraphGraph
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Richard Vallée @richardvallee.bsky.social · 28/08/2026
It's almost guaranteed that if the work had been done, there would be effective treatments for ME/CFS and many of Long Covid's consequences. The work was not done, it was obstructed, blocked, discouraged at every step. Still not being done at the scale that's needed. All by choice.
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Science for ME (S4ME) @s4me.info · 23/08/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 17 - 23 Aug 2026
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Science for ME (S4ME) @s4me.info · 17/08/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 10 - 16 Aug 2026
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ME/CFS Science @mecfsscience.org · 15/08/2026
2) This award is developed jointly with Science4ME. The jury includes ME/CFS researchers and patient representatives. This ensures that awardees are recognised not only for scientific rigor but also for their genuine commitment to helping patients and the ME/CFS community.
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ME/CFS Science @mecfsscience.org · 15/08/2026
1) The WE&ME Foundation has created an 'Emerging Leader Award'. It recognises outstanding early-career researchers who combine scientific excellence with meaningful engagement in ME/CFS or related post-infectious diseases. The application deadline is 15th October 2026.
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Science for ME (S4ME) @s4me.info · 09/08/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 3 - 9 Aug 2026
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Richard Vallée @richardvallee.bsky.social · 06/08/2026
Oh it's definitely a medical failure, it just happens to be a policy failure, too. Everything is political. Nothing is more political than strangers working in giant, faraway institutions making life and death decisions about people they will never meet and have no stakes into.
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Science for ME (S4ME) @s4me.info · 02/08/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 27 Jul - 2 Aug 2026
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Richard Vallée @richardvallee.bsky.social · 02/08/2026
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.
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ME/CFS Science @mecfsscience.org · 31/07/2026
⏱️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.
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Science for ME (S4ME) @s4me.info · 26/07/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 20 - 26 Jul 2026
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ME/CFS Science @mecfsscience.org · 21/07/2026
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.
mecfsscience.org
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
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Science for ME (S4ME) @s4me.info · 19/07/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 13 - 19 Jul 2026
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Richard Vallée @richardvallee.bsky.social · 18/07/2026
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.
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Long Covid Advocacy @longcovidadvoc.com · 16/07/2026
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.
Screenshot of a two-page open letter from Cambridgeshire ME and Long Covid Support, co-signed by Suffolk Youth & Parent Support Group and Bury & Bolton ME/CFS & Fibromyalgia Support Group, addressed to Professor Subodh Dave and Dr Jade Smith of the Royal College of Psychiatrists, dated 12 July 2026. The letter responds to the College's reply to an earlier open letter, arguing that reliance on the biopsychosocial model does not reflect current evidence. It cites the 2021 NICE guideline (NG206), post-exertional malaise, WHO classification of ME, and the DecodeME genetic study, contending that behavioural models have harmed patients and diverted biomedical research. The authors urge the College to align its activities with current evidence and NICE guidance.
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Richard Vallée @richardvallee.bsky.social · 11/07/2026
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.
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ME/CFS Science @mecfsscience.org · 05/07/2026
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...
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Science for ME (S4ME) @s4me.info · 05/07/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 29 Jun - 5 Jul 2026
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Richard Vallée @richardvallee.bsky.social · 30/06/2026
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.
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Richard Vallée @richardvallee.bsky.social · 30/06/2026
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.
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Science for ME (S4ME) @s4me.info · 28/06/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 22 - 28 Jun 2026
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Richard Vallée @richardvallee.bsky.social · 17/06/2026
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?
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