Jun 3
We Must Free Long COVID and the Patients Living with It from the Mind-Body Trap
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We Must Free Long COVID and the Patients Living with It from the Mind-Body Trap
The PACE Trial cost around £5 million of UK taxpayers' money
Sten Helmfrid @StenHelmfrid
For newcomers: Flow chart that describes how the #PACEtrial for #MECFS was designed, implemented, and sold as robust evidence for the efficacy of cognitive behavioural therapy and graded exercise therapy.
https://twitter.com/StenHelmfrid/status/1118061521916059648
More reporting on the PACE trial
From this Pete Judo video
I learned about this researcher:
Help UC Berkeley raise $65,000 for the project: Trial by Error Spring 2024. Your gift will make a difference!
i've lost the ability to blockquote (as in i don't remember) so here's some salient info:
Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"
I am once again seeking funds to continue my work on ME, ME/CFS, and now long Covid. These tax-deductible donations to Berkeley will support my academic position as senior fellow in public health and journalism at the Center for Global Health for the second half of this year--July 1-December 31, 2024.
is this where i @thebibliosphere ? i'm just a lurker but this sounds like your wheelhouse.
“#MEAction sat down with David Tuller recently for a wide-ranging discussion about the crowdfunding effort to help him continue his PACE investigations, the devastating stories he has heard from patients around the world, the poor media coverage of the PACE Trial flaws, and the ideal end result of all of the work he is doing.” http://www.meaction.net/2017/06/08/interview-with-tuller-on-pace-work
A new analysis of a 2011 study that supported dubious treatments for chronic fatigue syndrome finds that its conclusions were "not justified by the data."
(December 19 piece by David Tuller)
Note that the recent paper I co-authored on the PACE Trial only looked at recovery not efficacy in general.
The results they really didn’t want you to see: key ME/CFS trial data released
The results they really didn’t want you to see: key ME/CFS trial data released
Researchers at Queen Mary University of London (QMUL), have been ordered to release a full data from a controversial ME/CFS (myalgic encaphalomyelitis/ chronic fatigue syndrome) study known as the PACE trial. A preliminary analysis of the data reveals a shocking difference to the original published results, if the trials original data analysis method had been followed. The new analysis suggests…
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A much-touted study recommended therapy and exercise for patients with chronic fatigue syndrome. Problem is, it was based on bad science.