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  1. Simon M

    News from The Netherlands

    I'm hoping this is a good place to ask about diagnosis practices in the Netherlands. Along with Audrey Ryback (a researcher at Edinburgh in Chris Ponting's group) and @chillier, I'm using results from the 2021 EMEA survey to examine data on the age at illness onset for ME/CFS. One striking...
  2. Simon M

    National patterns of age of ME/CFS onset

    Copied from the News from The Netherlands thread I'm hoping this is a good place to ask about diagnosis practices in the Netherlands. Along with Audrey Ryback (a researcher at Edinburgh in Chris Ponting's group) and @chillier, I'm using results from the 2021 EMEA survey to examine data on the...
  3. Simon M

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    @Jonathan Edwards, did you see this? I’ll be interested in your response (apologies if you responded and I missed it)
  4. Simon M

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    I'm assuming the RA/Lupus/omplement example also ties in with your point about making all the details fit. I don't think they looked at onset time to fatigue, but then I think there is a lot more to be gained from prospective studies if done better. In particular, can we distinguish those that...
  5. Simon M

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    @Jonathan Edwards, thanks to you, Jo Cambridge and Jackie Cliff for putting together such a thoughtful model that, at the very least, shows how a serious explanation of ME/CFS should look. Apart from the detail, it seems to go out of its way to acknowlege various factors that don't obviously...
  6. Simon M

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    I wonder how relevant neural hypervigilance is. (If I’ve understood right, that’s the basic idea of the interception hypothesis, which a few years ago seemed to be the most popular way to add the bio to biopsychosocial. Just checking I have that right – it’s not an objection in itself.) But it...
  7. Simon M

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    That’s pretty depressing, if unsurprising. Thank you for putting your head above the parapet when you know what is flying your way. I don’t know if such trenchant opposition reinforces your view of the importance of this, or it is just part of the package? @ME/CFS Skeptic thanks for the...
  8. Simon M

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    which is itself a very helpful step. Up till now, it’s mostly consisted of “ Here is our finding. Here is how it could explain an aspect of the illness. Job done.” Are you saying that there is a clear prodrome and then an event that leads to full blown? ME/CFS? I thought some people argued that...
  9. Simon M

    Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank, 2025, Samms & Ponting

    C2: Self-report of ME/CFS from the pain questionnaire, 2,720 people. I'm starting with this cohort as it's the most extreme and also has data that can be useful for qualifying matched cases from other cohorts. The best thing about this cohort it asks people if they have ever been told by a...
  10. Simon M

    Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank, 2025, Samms & Ponting

    Some comments on the validity of each cohort, adding to what the authors say and what has been posted here to date. General point The cohort prevalence rates (all diagnosed cases) are mostly pretty high, runningging from 0.31% for G93.3 hospital admission recorded cases to 1.63% for those...
  11. Simon M

    Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank, 2025, Samms & Ponting

    I saw the other quote—it is confusing! But see Fig 2, whose data implies that Yes, No, No is the right answer.
  12. Simon M

    Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank, 2025, Samms & Ponting

    The paper Says that answering these three questions “yes, no, no” is consistent with PEM– Aren’t you agreeing? I agree that those questions aren’t very helpful in identifying PEM, But are relevant to ME/CFS, And could be useful in assessing the status of those in other cohorts who also answered...
  13. Simon M

    Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank, 2025, Samms & Ponting

    Cohort quality assessed by cohort overlap Those in C3 (hospital G93.3 code) come out best, C2 (PQ ME/CFS) worst The simplest way the study assesses cohort quality is by how much is a diagnosis in one cohort supported by diagnosis in another data field (i.e. in another cohort). I've graphed this...
  14. Simon M

    The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test, 2025, van Campen et al

    Thanks – and I just didn’t want you to think that I hadn’t even bothered to read the abstract (where the acronyms are spelt out) before asking a question!
  15. Simon M

    The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test, 2025, van Campen et al

    Thanks very much for that. I was also struck by the clean separation for biological variables – like you say, that’s pretty rare. Unless there’s a selection criteria effect. I’m still struggling little to understand the biological big picture and how important this is in the illness. But a link...
  16. Simon M

    The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test, 2025, van Campen et al

    Look neat analysis For the benefit of those of us not keeping up with this work, would you be able to explain what we are seeing here that is important, preferably spelling out the acronyms for CBF and CO, which muddle my brain? I am interested in CBF and the CO work, and these findings look...
  17. Simon M

    Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank, 2025, Samms & Ponting

    Where is missing data missing from, and why? Summary: All UKB participants have baseline assessment data (with self-reported serious illnesses), and almost all have hospital records (with diagnosis codes). Nearly half have GP records (with diagnosis codes), and a third completed the Pain...
  18. Simon M

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    Sorry, I haven’t been keeping up. Interesting analysis But 28% of that group reported good or excellent health, and they were other issues –, Though I don’t think it’s so bad a cohort because it’s not simply “self-reported“. People People were asked if they had a serious illness or disability...
  19. Simon M

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    Thanks for the responses, @forestglip and @jnmaciuch. My concern about AUC wasn't anything to do with diagnosis (it's too low to be useful), but as a way to demonstrate the biological validity of the findings. The authors say: My italics above. In this case, they are stressing the...
  20. Simon M

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    Could you just spell that out, please. My first quote is from the para, which begins with a discussion of simulations and concludes with the data on and "independent dataset" you quote. The next part begins, "To evaluate the performance of Heal2 on real ME/CFS data..." Are you saying the...
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