Many Drs & HCPs still believe that the advice that Emma was given, which made her #ME so much worse, is the correct advice
They're supported in many cases by the Royal Colleges, who refuse to support the '21 @nicecomms.bsky.social g'lines for #ME
Healthcare is still unsafe for #pwME
7) Bias would explain why the positive effects of exercise are only seen on subjective such as questionnaire, and not objective outcomes such as fitness tests. When exercise was proposed in ME/CFS more than 30 years ago, the main rationale was reversing deconditioning.
6) That seems to be the most crucial line in the whole review. At least the authors are upfront with it!
We disagree and think it likely is a fatal flaw. For more info on why blinding is important, see this brief history that we wrote about it here:
"The [OECD] report notes that long COVID has a health system and economic impact that is similar to stroke or multiple sclerosis, but has not sparked the same response."
That cost? $135 billion per year over the next decade, comparable to the entire annual health budget of the Netherlands or Spain.
Time to get ready for #MillionsMissing which will be May 9th-16th with focus on the 12th!
We have a guide by energy level to help you safely join in!
The goal of the guide is to do the SAFEST energy level for you and all the ones under it if possible.
Toolkit: bit.ly/MM2026toolkit
Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.
The lies. Good grief do they lie so much, they believe in nothing, only care about themselves. This is completely incompatible with good outcomes.
And the outcome has been abysmal, a total failure for decades. Zero surprise there, 100% a failure of choice, with zero leadership, courage or ambition.
This is the professional lobby of physicians in the UK.
Meanwhile all the other institutions are unified in doing everything to not solve this, pushing the same old failed nonsense that will never produce anything worth a damn.
Fully responsible, never accountable. Absolute nightmare mix.
The hubris of people in charge of a problem they are fully responsible for demanding help only for themselves.
The medical profession remains the only obstacle to solving Long Covid. They keep refusing.
No different than Trump's failure in Iran demanding others fix the problems he created.
Well, it's now up to 27% of the goal, with 186 donations. So, it's moving along a bit. Thanks to all!!--https://crowdfund.berkeley.edu/project/49720
8 ) For more info about this story see:
Science 2000. CDC Struggles to Recover From Debacle Over Earmark.
www.science.org/doi/...
Tuller. 2011. Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale
virology.ws/2011/11/...
4) Meanwhile the CDC was making cuts to its CFS program, discontinuing an adolescent study and not hiring a neuroendocrinologist due to "lack of available funds".
This was a lie.
1) Re-reading some ME/CFS history: in the late 1990s the CDC diverted millions of dollars budgeted for
ME/CFS into work on other diseases.
The CDC presented misleading data to Congress, a whistleblower was needed to uncover the misuse of funds.
Most human suffering is a choice made by other humans, who often know of the suffering they inflict but think it's actually good.
Not even a pattern, it's basically a universal law. This is who we are, it's what we choose to do as a species.
And so it goes on for #ME patients. We aren’t even called patients by many HCPs they call us malingerers, wrong thinkers and the latest ‘acquired neurodiversity.’ This testimony and plea from 2018, it could have been 1987 or 2026 because nothing changes. We just get older as we rot in our beds.
Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018
“It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”
The profession doesn't do introspection and never acknowledges its own faults. I have never actually seen it.
There are always more excuses for why they aren't to blame, and how in fact the victims are even more to blame as a result.
They're no different than Trump in this regard. Impunity rules.
It's been rationalized with the idea that people who had confirmed MS diagnoses were rarely dismissed as psychosomatic.
Which completely overlooks the fact that most diagnoses could not be confirmed, and so the vast majority of MS cases definitely used to be dismissed as psychosomatic.
Lots and lots of receipts of people telling the experts & authorities who dismissed all of this from the start that they were wrong about it.
Sadly, the notion of accountability in systems that rely on conformity is basically as delusional. Can't go wrong doing the wrong-but-authorized thing.
Although it's not as if people are ever held accountable for such decisions anyway, and "just following orders/rules" is the usual rationalization so we're pretty deep into that rabbit hole already.
The algorithms are all configured by humans, for humans, anyway.
Title page of a famous paper from IBM researchers: "A computer can never be held accountable, therefore a computer must never make a management decision"
The fact that they can do this to their own, which they always have done, is disturbing. The lack of basic respect is unforgivable.
It's like an army trained to abandon the injured, whose soldiers leave their fellows where they fall.
That's a weak army, lacking a moral ground.
Medicine still has no place for chronic illness, systematically refuses to. It never will.
There is simply no way to turn back from a ideology that has ruined tens of millions of lives based on delusional fantasies and fake evidence.
Way too much liability and embarrassment. Also, no courage.
“Trial By Error: How Many Awful Papers Can Trudie Chalder Produce?” By David Tuller @davetuller1.bsky.social (16 April 2026)
virology.ws/2026/04/16/t...
Urgent call to action urging the Senate to fund over $210 million for Long COVID and ME/CFS research by April 17 deadline.
1/
@SenMarkey, @SenTimKaine, and @SenDuckworth are championing a FY27 “Dear Colleague” letter for $210M+ in #LongCOVID research — and it includes #MECFS, #POTS, and #dysautonomia by name. Deadline is FRIDAY. 🧵
Re-upping this important advocacy opportunity for Americans because Bluesky was not working yesterday. Deadline is today at end of business day!
The easy explanation is that this is just who they are.
It also explains a lot about why they deliver so little, make almost zero progress over time.
But the blame lies at the top. None of this has to happen, the institutions of medicine and governments want failure here. They just do.
Trickle down grades.
Trick.
Das Bild zeigt das Logo und den Text der ME/CFS Forschungsstiftung sowie Informationen zu einer bevorstehenden internationalen Konferenz im Jahr 2026.
4 weeks to go until the International ME/CFS Conference 2026 🗓️ On May 7 & 8, leading researchers share the latest on #MECFS and #LongCOVID – watch it live via livestream. Register now ➡️ https://t.ly/us026
Ein Werbeflugblatt für eine Forschungsförderung mit Informationen zu deren Antragsdeadline und Website-Link.
⏰ Deadline April 30! We're funding clinical & basic #MECFS research with €2M through our Research Funding Programme 2026. Submit your proposal now!
👉 https://t.ly/rsH2f
