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hm, you are right, sorry. It looks like there is a massive symptom overlap though. They all have PEM

Surprised there isn’t more discussion on this. They’re making an extremely big claim, that 95% of patients w CFS diagnosis had a treatable metabolic disorder. However it looks like the treatment was stuff like coq10, folic acid, ALA, etc that many patients have probably already tried. I’m...

All I see is a child being coerced into giving an answer that will please the adult who is applying the “treatment”. What am I missing?

Seems like not only does this appointment need reconsidering, but also maybe Dr. CS needs to be reigned in as well? Setting aside the substance of the debate, the way that this has been communicated by CS and MEA strikes me as incredibly unprofessional. Just digging the hole deeper and deeper...

More info on Cort's blog here: https://www.healthrising.org/blog/2021/10/06/oxaloacetate-mitochondrial-supplement-chronic-fatigue-long-covid/ Looks like this is probably just sourced from the conference talk? I kept looking for a link to a publication, but didn't find one.

This paper struck me as being very surface level. Some questionnaires and basic labwork but not enough to uncover anything that wouldn't be obvious already.

Am I allowed to post it? It's an opinion piece, I don't know why it would be behind a paywall.... (edit: to clarify, I clicked it and there is no paywall for me, and I am not a subscriber.)

lol, I would sacrifice my senses of smell and taste for a single day without my other symptoms.

It's almost like we need a watchdog agency for this type of thing. It will keep happening again and again.

I will leave this here...

So they won't fund legitimate ME/CFS research, but they *will* lump us together with other completely unrelated conditions in an exploratory study on "fatigue"? OK.

Anyone know if there are any updates from this study?

I have a lot of thoughts about this, but I don’t want to be too judgmental in public. So I will just say that the information above makes me less enthusiastic about donating.

I simply cannot square the claims that have been made about this technology with the reality that it is not been worked on.

What’s the possibility that they find some viral persistence in long haulers, but the virus is not actually what is driving their symptoms?

There is a lot to respond to but I'm not really up to going point by point, nor do I think I really have a chance of changing anyone's minds. However, I just want to say that as it stands, I will probably not share any of my experiences with off-label medications on this forum due to not...

The high salaries at OMF really bug me too. I know the Bay Area has a high cost of living and all, but those numbers are very outsized for a nonprofit funded by patient donations. I have donated in the past and am not sure I would again after seeing the 990s. I hadn't seen this most recent one...

@rvallee has already hit the nail on the head so I don’t have much to add. Just that it is commonly accepted that using a “big data” approach will result in all sorts of bias, depending on how that data is collected. This is mentioned a lot (at least here in the US) in the context of policing...

Thanks so much for the transcription, Lisa. Prusty seems like a very nice, genuine guy and it's great that he is getting what appears to be sizable funding for his research. It is also nice, I have to say, to see him give an estimation of progress without falling into the "right around the...