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#myalgicencephalomyelitis

55 posts19 participants7 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
Tom Kindlon

Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in #LongCovid :

Here again is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome

Also shows all the range of ME / #CFS symptoms #MECFS

From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team
pmc.ncbi.nlm.nih.gov/articles/

@mecfs @longcovid #postexertionalmalaise

Table 4. Symptoms made worse due to physical or cognitive exertion (N = 1534). % (n) "Yes" % (n) at "2" Threshold 99.4 (1525) 98.0 (1504) 98.9 (1517) 98.3 (1508) Items 1. Reduced stamina and/or functional capacity 2. Physical fatigue 3. Cognitive exhaustion 4. Problems thinking 5. Unrefreshing sleep 6. Muscle pain 7. Insomnia 8. Muscle weakness/instability 9. Temperature dysregulation 10. Flu-like symptoms 11. Aches all over your body 12. Physically fatigued while mentally wired 13. Dizziness 14. Gastro-intestinal problems 15. Headaches 16. Ataxia 17. Increased heart rate/heart palpitations 18. Weak or stiff neck 19. Joint pain 20. Problems with speech 21. Sore throats 22. Muscle twitching 23. Night sweats and chills 24. Sore eyes 25. Nerve pain 26. Sore lymph nodes 27. Nausea 28. Tinnitus 29. Trouble breathing 30. Neurological symptoms 31. Excessive sleep 32. Loss of appetite 33. Migraines 34. Cardiac pain and/or arrhythmia 35. Brain twangs 36. Severe burning sensation all over skin 37. Paralysis/inability to move 38. Premenstrual symptoms 39. Decreased heart rate Sav
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