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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 one. Which means not treating the disease is not necessarily doing no harm, especially *if* there is a potential for an untested treatment to help...

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 people” people were MECFS patients or psych patients. Can you send me a PM to indicate where exactly you saw this? I heard second hand that one of the...

There may not be consensus among patients with respect to research priorities, esp. given very limited funding. Some folks might want to fund basic mechanism type research—others would prioritize clinical trials.

Charles Shepherd has posted a non-nuanced post warning PWMECFS against using Abilify. Others have replied that CS’s post was not nuanced, and perhaps overly alarmist.

Merged thread 900 million long Covid funding USA—status? Any updates on this @wigglethemouse ? Sounds bad.

Abilify is widely prescribed for depression and has the indication to be prescribed for depression, not only psychosis. As does rexulti, which also “works” for MECFS https://www.rexulti.com/ In fact I’d bet these drugs are prescribed more for depression than psychosis.

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 mentioned, this forum is perceived as being unfriendly (or maybe unsupportive) and anti-self-experimental. They are posting elsewhere. And there are a...

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 you imagine if they applied for a grant for a 3 million dollar study with NO basis to back it up?

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 there is a strong emphasis on finding "underlying mechanisms" for the disease. The thought is that if the underlying mechanism is found, then a cure...

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 on a different thread, which may not have been seen by forum members. I post it again here Maybe if @Lisa108 has interest/energy she could publish...

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 acquire data sets. https://docs.google.com/document/u/0/d/174XaalBtCgVC135bN5N2Z_HhYt2VHC-DHSNlnD8Xn30/mobilebasic https://endmecfs.stanford.edu/about

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 in this area.

He is not saying don't publish your research. He is saying the effort should be on finding cures not generating publications. Modern academia emphasizes publishing whether or not the article/research is important. If the researcher is overly concerned with generating publications for tenure...

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 other genes[8] and isolated the gene causing the methylopathy Autosomal Dominant Cerebelar Ataxia, Deafness and Narcolepsy (ADCA-DN), DNMT1.[9]