Interesting. This came out in 2023, and I was unsurprised then, and I don't think it drew any comment from PwME. I'm sure I've seen similarly high figures in other large patient surveys. Can anyone point to other large symptom surveys?
Assuming this is right, the surveys are more likely to be...
It hasn't been done yet, though something Chris said on the video makes me think they are considering it.
A big problem is that, while they can pick up people with a recorded diagnosis, we know many of those are wrong. And there's no questionnaire data to qualify.
The paper refers to the three...
Lots of conditions have chronic pain, so I'm not sure there would be enough people with undiagnosed ME/CFS to make a difference. Particularly as those most likely to be under diagnosed have non- white ethnicities. And they are under diagnosed with most things (the situation is more extreme...
Fantastic interview. Thanks to @dave30th and @Chris Ponting
It's aimed at those who want a bit more detail. Here are things that I think are new, or haven't had much attention yet:
Prereiew: DecodeME sent out the draft preprint to independent researchers ahead for publication ti get feedback...
Looks good to me. And the DecodeME team are well aware of these issues (and spell out the generic limitations of GWAS in the paper) - one reason the analysis took so long.
They have more analyses in the pipeline. I think fine mapping is one of these, like they did for the genetic signal for...
Thanks. I'm pretty familiar with the paper (which I hand in advance so that I could write the blog). I'd say the ChatGPT5 summary is astonishingly good - certainly as a summary (as opposed to any speculations). The custom GPT one was more mixed, but some good stuff.
I liked they picked up...
Yup. But I'm happy to offer some guesses :)
My estimate was guesswork, and assumed that the longest time would be needed for the sequencing itself
I believe about 90% of people with who provided a sample gave consent for it to be used for other purposes, so will be retained. I think they're...
Belatedly for SevereME day, would anyone be able to post about Veronica's recent poem, Art Therapy on any social media? Tomorrow would be fine too. Thanks very much (and thank you Rob)
On Bluesky
Link to full poem...
Re Newsweek, Simon W's own research, which uses Oxford criteria, shows that these broad criteria sweep up a lot of people with depression who do not meet even CDC 1994 criteria. (Reference: Eg his study, which is based CDC and Oxford criteria found no increase in the rate of CFS after UTIs in...
Vague assertions won't make the genetic evidence go away. I would like to see the evidence they have on depression and anxiety. I'm not aware of any that's any good.
The suggestion that it was going to be a long haul struck me as slightly wishful thinking, because then new evidence undermines...
Apologies, I'm going to bow out because I don't have the energy to do more than discuss the results here themselves ( not really even that). Particularly as I'm not familiar with the FND work, and haven't seen a summary comparing the two results.
I'm not sure, because I don't know the detail of the process, butI suspect the risk isn't that big.
First of all, the approach of GWAS is hypothesis free. The eight signals appeared using strict statistical tests and looking at the whole of human DNA. that dramatically reduces the risk of...
There will be a new analysis much sooner than that. I think what they have to do is to run the HLA imputation cases and controls at the same time (on the super computer, that is). , But that is not official – just that they are going to analyse it again
I think the paper explains that these are instead chosen by proximity to the lead variant. Not all genes have eQTL data, or not for all relevant tissues, and it may be that gene expression is only affected under certain circumstance - e.g. energetic demand in ME/CFS. I believe this is a thing on...
If all these arguments are right, I think you would expect to find a lot of common findings between chronic illness GWAS, and I don' think that is the case (though I think there is some evidence for genetic links to research participation etc).. Also, GWAS findings I'm aware of often tie in with...
Yes, that was the point I was trying to make: it's diagnosis by a heatlhcare professional plus meeting IOM/CCC criteria (assessed by symptoms, inc PEM).
Yes, and it sounds very plausible, though the reality might not have backed that up.
I'm not entirely sure about that. Certainly heritability was modest but non-zero (0.096, I think). Given that these are well defined individuals, I'm not sure if that number is also prone to the same confounders.
However, there will be subgroup analysis at some point, of comorbid conditions...
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