Did anyone catch this?
Re: Do no harm. I think in general, "people" underestimate the risk of untreated MECFS. Patients mostly experience this disease as a progressive...
Shockingly, I *actually* agree with the above post by by @Hutan Must be an unusual moon phase or something....
Sorry not seeing this. One person claimed that she heard of others getting tremors but didn’t provide evidence and did not say whether “these...
There may not be consensus among patients with respect to research priorities, esp. given very limited funding. Some folks might want to fund...
Charles Shepherd has posted a non-nuanced post warning PWMECFS against using Abilify. Others have replied that CS’s post was not nuanced, and...
Merged thread 900 million long Covid funding USA—status? Any updates on this @wigglethemouse ? Sounds bad. [MEDIA]
Abilify is widely prescribed for depression and has the indication to be prescribed for depression, not only psychosis. As does rexulti, which...
Not true. There are MECFS patients in NZ with Abilify scripts from NZ doctors. Positive about this. They are not posting here because, as I...
The study was “not good”, but it was not useless. It was not useless because it was at least something, with some data, however imperfect. Can...
That Twitter feed is bad/not hopeful.
@Simon M One significant-ish issue is that there isn't necessarily consensus among patients on research priorities. For example, on this forum...
For those complaining about the lack of communication from OMF they did release a 3 hour open house video with their researchers that was posted...
No, should be OK—I believe that’s what they want...hence the “open” in Open Medicine Foundation. I think you do need to provide a justification to...
ugh. I assume that the US NGO's will submit comments? Also Dave Tuller @dave30th should submit comments, since he has already done a lot of work...
He is not saying don't publish your research. He is saying the effort should be on finding cures not generating publications. Modern academia...
[MEDIA]
[MEDIA] RD talks about Abilify here...sounds like they are onto something. is this video posted somewhere else?
Sorry it didn’t last....
Yeah just saw that. Dr. Mignot identified genetic factors predisposing to human narcolepsy, such as human leukocyte antigenHLA DQB1*06:02 and...
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