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  1. Simon M

    Autonomic Dysfunction in ME/CFS: Findings from the Multi-Site Clinical Assessment of ME/CFS (MCAM) Study in the USA, 2025, Unger et al

    I'm sure I read that the compass – 32 questionnaire was shown to be a poor measure of objectively measured autonomic problems. But that report came out after this work would've been done. @ME/CFS Science Blog – 00 I misremembering something you posted? These are the small number of very...
  2. Simon M

    Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation, 2025, Jothi et al

    Thanks. That's more information that I was expecting. Yes, maybe AI will help standardise results.
  3. Simon M

    Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation, 2025, Jothi et al

    Can you remember any details of that, and does it refer to SFN testing in general? I had always wondered how reliable the findings were, but hadn't seen anything looking at the methodology?
  4. Simon M

    Haptoglobin phenotypes and structural variants associate with post-exertional malaise and cognitive dysfunction in [ME], 2025, Moezzi, Moreau et al

    I'm sure that's been done a few times. And quite a few of those severe ended up halfway between health controls and mild/moderate, sometimes with generous explanations of how this makes sense. Which makes me wonder if it's a case of more red herring is.
  5. Simon M

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

    Interesting analysis. Worth noting that maybe a third of pwME had depression after they relaxed the recruitment criteria. I think they are planning to do a sensitivity analysis with excluding this group. I also gather that depression has a broad signal that correlates with many things...
  6. Simon M

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

    I think sleep disturbances are in all the main case definitions, and it's one of the four core items for IOM criteria. In DecodeME data, it's close to 100% of people reporting sleep problems. This seems much higher than in other chronic illnesses (at least that don't mainly affect older people )...
  7. Simon M

    What advocacy use should be made of DecodeME results?

    I think what many ordinary people have in their minds, much the same as what medics have in their minds, is that if there isn't a clear biological explanation then it must be all in the mind. So ME/CFS is captured by the default assumption, not that people have a specific opinion on it. But if...
  8. Simon M

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

    Hi Woolie, great to see you again - though I may have missed you previously. That's true - here's one at the top of the tree on Google https://www.nature.com/articles/s41562-024-02076-3 At the same time, research studies are always strongly skewed to higher SES, amongst many things. Yet for 15...
  9. Simon M

    DecodeME Initial Results Webinar, Thurs Aug 14th, 3:30pm

    I don't know if the Webinar info on SequenceME and Long Covid has been discussed before. I found it pretty interesting transcript: CHRIS DecodeME is only finding some of the genetics. Sequence ME and Long Covid would find more of the genetics beyond what we've already found and that is...
  10. Simon M

    DecodeME in the media

    If that's what they believe, it would help to spell it out in the context of why they think DecodeME supports their current work on drugs. Each specific signal is important, a finding point pointing to biology. And for each of these, compared with controls, there is no signal in controls. P<...
  11. Simon M

    DecodeME in the media

    Re molecular biologist Marte Kathrine Viken at Oslo University Hospital (OUS), who has herself researched ME and genes. That sounds very sensible Re Prof Tronsdat I wasn’t aware that we were making any progress towards treatment. The immune system and the nervous system are very broad areas...
  12. Simon M

    Published poems by Veronica Ashenhurst, who has Severe ME

    It's a wonderful opinion piece by a medic who has clearly retained his compassion throughout his career. Combination of better hours with your poetry is powerful, and suggest that the editorial board really understand understand your poem, and hopefully the biggest issues as well. Thank you...
  13. Simon M

    DecodeME in the media

    This starts off brilliantly and cover the GWAS itself well, right up to the 8 genetic signals. At which point it veers off course. The blog ignores the analysis identifying the most likely ggene candidates and puts a lot of emphasis on associations between lother genetic findings the regions...
  14. Simon M

    Interferons as mediators in ME/CFS

    Most of this thread is way over my head, but I thought I'd comment on this approach (not necessarily this paper from the team), which was much discussed at the time. The study had been years in the making, and I found it a bit disappointing as a model. they used the shoulder fatigue scale to...
  15. Simon M

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

    Thanks. There were no HLA/MHC gene flagged as likely candidates in DecodeME. Excluding HLA, do you have any feel for what percentage of human genes are immune ones?
  16. Simon M

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

    Could you clarify that, please? The way it was explained to me, magma looks at the set of 13 genes only, and compares them with other genes. It doesn't look at any other ME/CFS genes. Are you saying that's not the case? I may have misunderstood you or what was explained to me originally.
  17. Simon M

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

    It sounds like an interesting thing to do. But he thought anyone commits resources to do any experiment, it would be useful to have the planned analysis narrow down the like candidates. Which would also presume they have a big impact on the credible hypothesis. Maybe it's because I've been ill...
  18. Simon M

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

    Maybe a better way is to estimate the number of immune genes. I found one at about 1600 genes . https://pubmed.ncbi.nlm.nih.gov/15789058/Let's say 2000 – or about 10% of all human genes. As far as I can see, quite a lot more than 10% of candidate genes linked to the DecodeME genetic signals...
  19. Simon M

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

    On the face of it, the magma analysis is the stand out finding, and highlights stuff going on in the brain. However, my understanding is that magma is not as robust as the EQTL analysis, though I think that's probably debatable. I think that's the reason why the authors is placed less...
  20. 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 that is the case. The first thing they look for is the genetic signal, then they look to see what was captured by that genetic signal. I think that was mainly protein coding genes. I had a feeling there was at least one RNA species. I don't know if that showed up in the...
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