Davit Tuller has been a great enforcer of science and academic integrity for ME/CFS. He has continuously debunked fraudulent "science" like the infamous PACE trial.
Please support his work if you can.
#MECFS #LongCOVID
An authority Headline: Authorities Frustrated By Awareness Of Long Covid Outside Of Designated Long Covid Awareness Day Story by Sam Likewise and Clark Cubicle Photo from Unsplash
Authorities Frustrated By Awareness Of Long Covid Outside Of Designated Long Covid Awareness Day
Post by Trish, Moderator at the Science for ME forums. Wednesday at 9:39 AM > Sean said: > Well, the identify and quantify bits are okay, the 'understand' bit is worrying. The quantify bit of this project is the bit that probably concerns me most. The intention is clearly to find ways to demonstrate value for BACME clinics by generating numbers that they can push in their required direction. But the numbers are meaningless when the questions don't and can't capture reality because they are so badly designed, and when they try to add together scores that are not measuring anything meaningful, let alone on a linear scale. source: https://www.s4me.info/threads/the-me-association-clinical-assessment-toolkit-me-cat-and-app-autonom-e.47303/page-4#post-686864
And if you think I may be a little harsh? Read this thread.
These proms are designed to justify our vile bacme clinics. Meaning our abusers are *still* in charge of our care. Funded by the largest supposed patient charity in the UK
Trish sums it up nicely here I think. www.s4me.info/threads/the-...
Is it likely we will see the results of the Scheibenbogen rct at Charite this year?
Hello, I am Alex Goldman, the host of @hyperfixedpod.bsky.social and the former host of Reply All, which some of you probably listened to and liked. I have noticed that a lot of former Reply All listeners have no idea my show exists, so I feel like there's a big untapped audience out there.
These are the people we are trusting with our NHS data...
It is very appalling and sometimes quite frightening to see how trans-exclusionary feminists have allied with rightwing attacks on gender. The anti-gender ideology movement is not opposing a specific account of gender, but seeking to eradicate "gender" as a concept or discourse, a field of study, an approach to social power. Sometimes they claim that "sex" alone has scientific standing, but other times they appeal to divine mandates for masculine domination and difference. They don't seem to mind contradicting themselves. The Terfs (trans exclusionary radical feminists) and the so-called gender critical writers have also rejected the important work in feminist philosophy of science showing how culture and nature interact (such as Karen Barad, Donna Haraway, EM Hammonds or Anne Fausto-Sterling) in favor of a regressive and spurious form of biological essentialism. So they will not be part of the coalition that seeks to fight the anti-gender movement. The anti-gender ideology is one of the dominant strains of fascism in our times. So the Terfs will not be part of the contemporary struggle against fascism, one that requires a coalition guided by struggles against racism, nationalism, xenophobia and carceral violence, one that is mindful of the high rates of femicide throughout the world, which include high rates of attacks on trans and genderqueer people. The anti-gender movement circulates a spectre of "gender" as a force of destruction, but they never actually read any works in gender studies. Quick and fearful conclusions take the place of considered judgments. Yes, some work on gender is difficult and not everyone can read it, so we have to do better in reaching a broader public. As important as it is, however, to make complex concepts available to a popular audience, it is equally important to encourage intellectual inquiry as part of public life. Unfortunately, we are living in anti-intellectual times, and neo-fascism is becoming more normalized.
The section that the Guardian censored…
By Prof Judith Butler
Many patients dread going into unsafe A&Es and other healthcare spaces where infection control is lacking - we have learnt: ‚vulnerability‘ often only shows itself in retrospect
#LongCovid
#ME
A cold could kill my daughter - hospital visits feel like a death sentence www.bbc.co.uk/news/article...
Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS
“This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”.
Clip from Hope 4 ME & Fibro NI 2026
Of course speaking out is necessary but not sufficient.
But its the very least we should expect our government to be doing.
It's time to suspend all US military from UK soil.
And the clock is ticking.
It's now been 3 hours since our supposed "ally" Donald Trump threatened genocide on a country of 93 million people.
We've had absolutely nothing from the UK government.
This doesn't come in a vacuum either - every day the US & Israel have been murdering innocent people.
Starmer should immediately & unequivocally ban access to British airspace to US warplanes. The UK should not be accomplice to a US President who is threatening more war crimes. Period.
when someone says "a whole civilization will die tonight" usually you lock them up in some facility. anyway, great job, media.
This is just the only ethical position when the US President is enthusiastically advocating civilizational destruction and war crimes, you can't "sensible politics" out of this one
That particular person's prominence is very frustrating and pretty much entirely based on her telling the government, insurance companies and the medical establishment precicely what they want to hear.
Question from a #LongCovid patient to #ME patients, who have been dealing with this for much longer:
how do you manage to keep going with your advocacy work, when you are constantly faced with other voices (who claim to know better than you do) getting promoted, in the media and beyond?
I’ve written a short thread responding to Suzanne O’Sullivan’s claim that criticism of her books largely comes from “10 people on social media” highlighting responses from UK ME charities.
twitter-thread.com/t/2041098446...
I never thought I'd spend my thirties stuck in bed trying not to dream of what my life might have been like if I hadn't gotten #MECFS
Just a friendly reminder that I didn’t become disabled until I was 50. Literally two weeks after my birthday, and I’d ironically been ‘getting fit for fifty’, and was in peak condition. Shit happens. Manic Street warning - if you tolerate this then your children could be next. Or you. Or anyone.
Now Trudie Chalder says "recovery from CFS" through CBT doesn't mean absence of symptoms and getting back to regular life but is more about accepting and coming to terms with chronic illness. Huh??? Isn't that acknowledging that CBT doesn't really produce "recovery"? virology.ws/2026/04/03/t...
Instead of continuing to waste money on pointless psychosomatic explanations, we should push forward with biomedical research to finally achieve real progress for those affected. A shitty situation remains a shitty situation, even if I’ve learned to cope with it. #MECFS
Adults forced a young girl named “Cara” to remove her mask for their comfort.
Cara’s mother had cancer and was immune compromised.
Cara caught covid, gave it to her mom and her mom died.
Imagine doing that to a child because you don’t want to see a mask?
It’s appalling.
1) A new article in The Lancet Infectious Diseases calls for "routine patient review of all manuscripts on long COVID, including but not limited to clinical trial protocols and results, pathophysiological research, and opinion pieces"
With Suzanne O’Sullivan claiming a ‘large proportion’ of #LongCOVID is psychosomatic on the Amol Rajan podcast, I’m resharing this clip from 2021 of Dr Xand van Tulleken on BBC Morning Live
“You can always find some doctor, some professor to give a quote to a paper saying it’s all psychosomatic…”
11/
“(Contd) There is a particular cruelty in being too sick from a disease to advocate for awareness of that disease on the day set aside for exactly that purpose”
#mecfs #longcovid
The Debt Came Due Notes From a Crash Fred Rossi Mar 30, 2026 There is a version of my life that exists in my memory like a photograph from a trip I’ll never take again. In that version, I wake up and get out of bed without negotiating with my body first. I drive to work. I talk to people. I solve problems. I go home. I am tired in the way ordinary people are tired, the kind of tired that a night’s sleep fixes. That life is gone. What replaced it has a name. Long COVID. ME/CFS. Post-exertional malaise. The clinical language is clean and distant, which is probably why it fails so completely to describe what it actually feels like to live inside this body right now. Here is what it feels like: I am in a crash. What a Crash Is People who don’t have this illness hear the word “crash” and picture something dramatic. A sudden collapse. A trip to the emergency room. Sirens. A crash is not that. A crash is slower and more total. Post-exertional malaise is the medical term for what happens when someone with ME/CFS or Long COVID exceeds their energy envelope. The body doesn’t just get tired. It breaks down. It stops regulating itself. And unlike ordinary fatigue, which responds to rest, PEM doesn’t resolve with sleep. It compounds. Every small expenditure of energy, whether physical, cognitive, or emotional, costs more than it would in a healthy person, and the debt accumulates in a way that rest can only partially address.
🧵
Thoughtful blog post by someone with #LongCovid & #MEcfs. Initially focuses on describing the PEM effects of working 3 days in a row before discussing how the whole illness(es) & the effect it's having on his life is making him feel emotionally
centerleftstack.substack.com/p/the-debt-c...
#PEM
1/
Suzanne O'Sullivan is causing harm to people with MECFS and long covid and she needs to stop. She has no insight into these conditions whatsoever.
a woman coughing Headline: Covid Is Mild And Over So Wash Your Hands To Avoid Breathing It In Story by William Munny and Bennett Jerseyboat Photo by Adobe
Covid Is Mild And Over So Wash Your Hands To Avoid Breathing It In
Unbelievable. Recovery means accepting you're sick. Orwellian.
'Our treatments don't work and even we can't deny that at this point but if we frame this way maybe we can keep providing services for these patients we can't help'.
Fraudulent claims about "mind-body" behavioral treatments for chronic illness have been made for 4+ decades. This is far worse than what Theranos did, and by now the fault is entirely at the top.
None of this pseudoresearch will ever add up to anything, it's ethically and intellectually bankrupt.
