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Like every other research finding in ME/CFS, this one is perplexing. I imagine it's unlikely to be an artifact, but we still don't know if this is a cause of the illness or an effect. It's quite interesting that they found the same changes in narcolepsy. Maybe the actual cause of ME/CFS causes...

Rationing is a far better term for what we must do. Pacing implies confidence and accomplishment, like a runner picking a sustainable pace so they can win. But we can't do nearly as many things as healthy people, even with pacing. Rationing implies making real sacrifices and a degree of...

I watched as much as I could bother (I'm not hatewatching an hour-and-a-half long video). Disappointingly, his discussion is entirely focused on simple PTSD and ignores complex trauma which is at least as common (albeit far more insidious). For example, he talks about folks' trajectories after...

I am extremely skeptical that trauma is not permanent, at least if it happened in childhood. (And there's increasing evidence adolescence is another critical period for neurdevelopment.) It doesn't line up with what we understand about neurodevelopment. People who are unable to learn language...

High doses of vitamin D make more sense than the others, because your body stores it for a while. You can take a large dose weekly instead of a small dose daily. 10,000 IU a day is the lowest dose ever found to give someone a problem, but it's quite a reasonable dose if taken weekly.

COFFI is wrong, DecodeME really is groundbreaking. It's the first bite of the cake.

Maybe we need to sorts of photos you see in articles whose subject matter isn't easily illustrated--often in the case of people ripped off or harmed by pollution. A picture of someone and their family sitting down in a setting that represents them or their community--like their porch or a park...

Really saddened at how they covered it, by assuming that his recovery from ME/CFS was some sort of personal achievement as opposed to a stroke of luck or a treatment that worked. Stoner himself said nothing about how or why he recovered. We don't know why recovery from ME/CFS happens, but it's...

Have any of us processed the data using false discovery rate (FDR) correction instead of Bonferroni? It would be useful to see what genes pop up when we use a looser test of significance, especially as a method of hypothesis generation.

That's disappointing. I was hoping they'd help a good number of people while being a bright spot in research and advocacy. But they only lasted about 2 years.

I like the writing style of this paper. When I read through the whole thing, it struck me as very comprehensible considering the subject matter. Unfortunately, a lot of scientific papers are extremely dense and you can only understand them if you're an expert in that tiny field. But Ponting's...

I don't trust research based on obituaries because somebody once used them to claim gay people had far shorter life expectancies in order to push their homophobic narrative that it's unnatural and dangerous. There's huge potential for bias: Some people's obituaries won't mention ME/CFS...

I'm very thankful for all the hard work your team put into DecodeME. I've been following it for so long and finally the results are coming out. I can't wait to see what it is. I don't expect a negative result at all. Not with 20k people. I predict that the genes they find will primarily be...

My bad. I assumed that they would be funding it if they're promoting it in emails, but I haven't heard they're funding it.

Why do I just imagine a headline in the style of Metro when I read this Town in Brazil where people can't WALK: Psychologists explain why

I'm very disappointed the OMF is funding this. There's no plausible mechanism by which water with hydrogen dissolved in it could help, and the previous evidence they gatheres is so low quality as to be meaningless. Edit: I don't have any evidence they're funding it rather than just promoting it.

The abstract sounds like absolute gibberish.

That's my city. I'm not impressed.

Gee, I'm glad for the thread because the abstract made it seem promising enough to definitely warrant a larger trial, when it's in fact slightly better than the Rituximab data. It would still be good to do a larger trial, but keep expectations modest.

They don't have a treatment but a supportive doctor can mean educating someone about pacing, helping them get disability benefits or trying to find a medicine that takes the edge of certain symptoms. It's unfortunate that Long Covid and PAISs are stuck in the pre-science era in terms of...