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#pwme

39 posts14 participants4 posts today
Public
Tom Kindlon

Trial By Error: My Visits with Alem Matthees, 2025
virology.ws/2025/04/14/trial-b

Explains the heroic work Alem did, the effect on the #MECFS medical scene of his work but also the health effects Alem suffered as a result, as he now tragically lives with #verysevereME. 😢

This could have been prevented if the PACE trial authors had released the data! 😡

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Among many methodological and ethical lapses, the authors weakened their key outcome measures from what they had promised in the protocol and omitted key data from their papers. In the process, they misrepresented their findings and violated core principles of scientific research. Alem sought the missing data under a freedom of information request—a prolonged battle that ended up in a tribunal hearing in April, 2016. In advance of the hearing, Alem prepared a massive and masterful brief and submitted it to the tribunal. That summer, the tribunal ruled in his favor and against QMUL, the institutional home of the lead author of the main PACE trial report. The subsequent data release led to the publication two years later of a definitive rebuttal of the PACE trial claims. (Alem and I were among the co-authors of this paper.) After Alem’s legal victory, it was no longer necessary to speculate about how bad the PACE results were likely to have been. The reanalysis documented that, per the measures as outlined in the protocol, the interventions did not lead to recovery, and any reported improvements were so marginal that they could easily be accounted for by bias.
Public
Will 🏳️‍🌈

My body pain is rather curious. I'm not sure how long it's been going on at this constant level, but I think far shorter than the time I've been diagnosed with fibromyalgia or ME/CFS.

No matter how much I stretch, take hot showers, or use heating pads to leech the pain away, it doesn't reduce even slightly. It's like I'm trying to escape my body, but the skin refuses.

And the much-vaunted "just exercise to get healthier" is as unattainable as anything I can imagine.

Relatable?

#ChronicPain#Fibromyalgia#MECFS
Public
David Bridger

My updated #introduction on Mastodon.

I'm an author, mainly of science fiction and fantasy. Pagan. Dedicant of the Morrigan. Old salt. Cold War rebel -> present day anarchist. We are the resistance. Friend of crows, rescuer of dogs, adopter of donkeys. Trans ally. The pronouns I prefer are he/him. I live with ME (#pwME) and arthritis.

If I get an unlikeable vibe off you, I'll block you. No argument. No trading of insults. No warning.

My books are my activism: beatentrackpublishing.com/?ref

www.beatentrackpublishing.comby David Bridger...
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