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  1. Simon M

    A first study of cytokine genomic polymorphisms in CFS: Positive association of TNF-857 and IFNgamma 874 rare alleles, 2006, Carlo-Stella et al

    I remember talking to Chris Ponting this study years ago, and the possibility of a study focused on immune genes. These are much more affordable. His comment was that these kind of targeted genetic studies used to be very popular, but have a poor track record on replication. And that's when...
  2. Simon M

    Published poems by Veronica Ashenhurst, who has Severe ME

    Possibly Veronica's finest so far. Yes, heartbreaking.
  3. Simon M

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

    Good analogy I'm pretty sure genes identified by GWAS make identical proteins, and variants instead alter gene regulation, usually not by very much. That's one reason why effect sizes are small. So it may be that the dam is stronger because a bit more of this protein is produced. But the...
  4. Simon M

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

    How sure of this can we be at this stage? The two specific bits of evidence I'm aware of, the most relevant CA 10 for pain, which is directly affects neuron. However, there's also a microglial gene. Microglial are glia not neurons. Then there are the 13 tissues where candidate ME/CFS genes are...
  5. Simon M

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

    I would say the gold standard is diagnosis by expert clinicians. We know from a couple of studies that half of GP diagnoses are wrong – and almost all cases because that had been other, undiagnosed diseases (mostly biomedical, but also psychological) that explain the symptoms. I suspect the...
  6. Simon M

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

    Thanks, both. That have been my understanding, but I wanted to check it. ADDED and I think this is an important message to convey to people who understandably wonder what the relevance of this big genetic study is to them when many won't have the relevant genetic differences, and heritability...
  7. Simon M

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

    (This as the answer to the question about how can small genetic differences between cases controls produce valuable information ) Is it also true that somebody who doesn't have a relevant genetic difference in a particular gene can benefit from any such drug targeting the biology behind the...
  8. Simon M

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

    I suspect it is it's practical rather than strategic. I believe sex chromosomes have to be analysed separately in all GWAS . So it makes sense to do all the autodomed (non--sex chromosomes) first. The wind we also have six chromosome data – which is one of the things they flagged up – we'll...
  9. Simon M

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

    I know there was extensive QC, and your and @forestglip 's Manhattan plots showed how important they were (there would have been lots more exciting results without QC, no doubt lots of blind alleys). Maybe @Andy can comment?
  10. Simon M

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

    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...
  11. Simon M

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

    Belated thanks for creating this audio– must be very helpful for some people
  12. Simon M

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

    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...
  13. Simon M

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

    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...
  14. 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...
  15. 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...
  16. 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...
  17. Simon M

    DecodeME in the media

    Thanks for setting this up
  18. 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...
  19. 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...
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