This is the agenda. It looks really bad. Like there are only one or two people who have an understanding of MECFS....
https://www.healthrising.org/blog/2024/09/09/ron-davis_working-group-2024-meeting/ Of Firehoses and Hope: An ME/CFS Advocate’s View of Ron...
He doesn’t spill any beans.
Step counts before and after treatment.
https://www.writingruxandrabio.com/p/is-progress-in-medicine-too-slow In which I discuss why people with different backgrounds disagree on this...
I think they took the antibiotic?
What did they take???
https://wapo.st/3TFLe3l Researchers found that people with upper gastrointestinal conditions were far more likely to develop Parkinson’s disease...
[MEDIA] Rob Phair 2 patients who improved greatly from Jak stat1 inhibitors.
For a bunch of reasons, I don’t really have any problem with the idea of a closed meeting. I do sort of have a problem with them starting that...
[MEDIA] now it’s lightening talks. 2 min. 1 slide. First is Tess Fallor on AmoxiClav induced remission events. Ugh!
Any idea why the interest in Filgotinib versus say rinvoq?—both are JAK1 drugs. Rinvoq advertises that it reduces fatigue (presumably in RA).
[MEDIA] Robert Wust talking about PEM. Exercise is NOT good medicine for ME. Muscle abnormalities in PEM. LC and ME groups. Not due to...
Yes, closed.
Ok…. Why no talks by Fluge/Mella? Was there a falling out? Also not thrilled to see KDM there.
[MEDIA]
Mostly agree with these points about overly long introductions. Yes because the general knowledge level about MECFS is much much lower than say...
But there is no planned phase 3 trial for cyclophosphamide. So if you want “robust evidence” it may never happen.
[MEDIA] Janet Dafoe This was at a hearing with three speakers who spoke for about a half an hour each and at the end the public got to talk. Ron...
[MEDIA] Ron Davis today at the Santa Clara County ME hearing: “..we think this disease is initiated when you initiate innate immunity…you can...
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