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  1. Simon M

    DecodeME in the media

    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...
  2. Simon M

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    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...
  3. Simon M

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    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...
  4. Simon M

    DecodeME in the media

    Thanks for setting this up
  5. Simon M

    DecodeME blog: X marks the spot where ME/CFS biology can be discovered

    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...
  6. Simon M

    Published poems by Veronica Ashenhurst, who has Severe ME

    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...
  7. Simon M

    Criticisms of DecodeME in the media - and responses to the criticisms

    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...
  8. Simon M

    Criticisms of DecodeME in the media - and responses to the criticisms

    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...
  9. Simon M

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    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.
  10. Simon M

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    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...
  11. Simon M

    Genetics: HLA-DQA*05:01

    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
  12. Simon M

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    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...
  13. Simon M

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    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...
  14. Simon M

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    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.
  15. Simon M

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    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...
  16. Simon M

    DecodeME in the media

    Me too. My sister, niece and mother had come by (rare for us to be together, and it has to be short due to my health) with a takeaway. We watched the C4 report together in stunned silence - it was some moment to share. Thanks to Chris, the participant, Tessa Munt(??) and the C4 team for the...
  17. Simon M

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    In simple terms, the headline one is the strongest of several candidates for each genetic signal (though more than one gene covered by a genetic signal may play a part in the illness. This is from the DecodeME blog: > DecodeME identifies top genes DecodeME has started searching for the...
  18. Simon M

    DecodeME blog: X marks the spot where ME/CFS biology can be discovered

    I think the ambition is to sequence 10,000 people, and the cost would be I think at least £6 million (sequencing costs have fallen a lot since DecodeME was funded five years ago). The proposed new study already has a name – SequenceME It works in a different way to GWAS. Certainly, it would...
  19. Simon M

    Criticisms of DecodeME in the media - and responses to the criticisms

    There were two parts to this. The study was of people who reported they had a diagnosis from a health professional. The study screening questionnaire also asked people about their symptoms. Only people who met the criteria for either IOM or Canadian consensus definitions were invited to...
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