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#cfs

32 Beiträge12 Beteiligte0 Beiträge heute
Fortgeführter Thread
Öffentlich
Douglas

One nice thing with the #Zepbound is my body is much less on edge and I'm pretty relaxed mentally which is a great change. Also my brain in general is functioning better. I am losing about 2lbs a week as well.

I guess I'll see what happens next week on Tuesday. Although we'll probably be doing a fair amount of driving and walking around this weekend, too.

#CFS#LongCOVID
Fortgeführter Thread
Öffentlich
Douglas

I felt pretty awful yesterday but was able to function more or less normally throughout the day. Over the weekend we did drive a lot and on Monday evening we walked for a mile. I also ate black licorice which is not something I usually eat. And I had my weekly Zepbound injection.

So one of those things probably was giving me some #LongCOVD #CFS symptoms? Or is it #Zepbound side effects? I haven't had any side effects from Zepbound up to this point.

Öffentlich
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.
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