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What evidence do you have that these four studies are not, in fact, MECFS studies? MECFS is agnostic with respect to the trigger.

I’ll save the UK a lot of money here. Long Covid is Covid-triggered MECFS.

https://www.prnewswire.com/news-releases/paxmedica-announces-positive-results-from-phase-2-trial-of-pax-101-iv-suramin-in-children-with-autism-spectrum-disorder-asd-301224425.html PaxMedica Announces Positive Results from Phase 2 Trial of PAX-101 (IV suramin) in Children with Autism Spectrum...

Maybe doesn’t provoke symptoms because it might be a minor component relative to other bigger factors that are treated by cyclophosphamide.

Probably not a good idea to go on and off antipsychotics repeatedly like this—may lead to long term problems with withdrawal and kindling. https://en.m.wikipedia.org/wiki/Kindling_(sedative–hypnotic_withdrawal)

Around 2mg. About 4 months.

Going on and off antipsychotics is not a good idea... https://www.mind.org.uk/information-support/drugs-and-treatments/antipsychotics/coming-off-antipsychotics/ I stopped taking Abilify after it stopped working and now have insomnia and hot at night feeling (like night sweats), which I didn’t...

Most/many people with MECFS respond positively to steroids—we’ve already discussed this and you said you weren’t sure about the mechanism.

To clarify—comment wasn’t directed at Trish—sorry for any confusion.

If a RCT trial demonstrates a 30 or 50% decrease in fatigue for Abilify that would be huge and would almost certainly earn Abilify a prescribable (sp) indication for MECFS. And would be fantastic for patients! So my opinion is that this should be among the highest priority areas of research...

yes it is—like here for example. https://www.depressionforums.org/forums/topic/78550-abilify-has-it-stopped-working-or-do-i-need-a-higher-dose/

Correct—I agree. Which is why I was put-off by the somewhat overly-critical sentiment coming from this thread about a med originally developed for psychiatric conditions that might be repurposed for MECFS. Fine to criticize the shortcomings of the published study. But not fine to criticize the...

This first comment on that Reddit thread points out the problem of tolerance and how s/he overcame it.

This is the second partial dopamine agonist study in two days—the first was this one https://www.s4me.info/threads/open%E2%80%90label-study-with-the-monoamine-stabilizer-%E2%80%90-%E2%80%90osu6162-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-haghighi-et-al-2021.18971/ Also there are...

Dear @Hutan I honestly think you are being overly critical here...~50% reduction in fatigue and brain fog is pretty significant.... But this is your opinion...it is not mine. There are several patient reports of people going from severe/very severe (like bed bound in dark rooms) to moderate...

To clarify a bit, the Abilify itself causes weight gain—this is a side effect.

An alternative explanation is that aripiprazole is actually effective at treating the symptoms of MECFS. Authors don’t claim this a RCT study. Weight gain is a side effect of antipsychotics so actually surprised weight gain was rather low.

The main challenge will be how to overcome tolerance/tachyphlaxis/ poop-out.

Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a retrospective study of 101 patients treated with a low dose of Aripiprazole...