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  1. 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...
  2. 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...
  3. 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!
  4. 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...
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. 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...
  10. Simon M

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

    Like you, I find the discussion fascinating, especially after 30 years with little happening in research. But maybe this is the time to raise some methodological concerns. I haven't been able to read the whole paper or all this thread, and I'm likely to be wrong about a lot of this. There are...
  11. Simon M

    Published poems by Veronica Ashenhurst, who has Severe ME

    Your poetry resonates with me. Yo capture the experience of severe ME with beautiful language striking imagery. Above all, you convey the emotional impact of this life.
  12. Simon M

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

    I think it’ll be great when these findings are published because they will finally give us a fairly solid reference point. At the moment, it’s not that hard to find study results to support most theories. Thesse reference points will make much of the literature more interpretable.
  13. Simon M

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

    But until we know that’s the case, I don’t think we should take it on trust. I gather the AUC for the replication cohort wasn’t very impressive here, which doesn’t inspire confidence.
  14. Simon M

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

    I’m pretty sure the experience of GWAS was that you do need decent sample sizes to get reliable results – not just more results. The early history was getting almost everything wrong. The exceptions are where you are looking for very big differences, like your ankylosing spondylitis example...
  15. Simon M

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

    I understanding is that the bare minimum for whole genome sequencing is 1000, which I think is bigger than this study. But as with GWAS Bigger is much better. Sequencing is incredible expensive, so I’m pretty sure the largest sample size is for greater power to understand the problem. But I’d...
  16. Simon M

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

    This gets even more exciting. Like the posts on self-reports, this tries to understand how the cohorts were selected rather than the data itself. G93.3 in hospital records (1997-203), Cohort 3, C3 Hospital records cover those 'occupying a bed', so inpatients and day patients, but not...
  17. Simon M

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

    Data defining the cohorts: 2. Self-report of ME/CFS (Cohort 2, C2) Experience of Pain Questionnaire (optional and online, 2019-2020) This questionnaire directly asks if respondents have ME/CFS: Have you ever been told by a doctor that you have had any of the following conditions? There are a...
  18. Simon M

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

    Data defining the four cohorts of this study. 1. Self-report of chronic fatigue syndrome (defining cohort C1) This comes from the baseline assessment (and visits 2-4 where made), and it looks like participants were not prompted with a question about CFS. Participants completed a touchscreen...
  19. Simon M

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

    Relevant background about the UK Biobank cohort The UK Biobank was set up as a prospective study of mid- to late-life illnesses. Via the NHS, it invited over 9 million people aged 40 to 69 who lived close to a string of assessment centres to take part. Over 502,000 people were recruited, over...
  20. Simon M

    Exercise Pathophysiology in ME/CFS and Long COVID: Commonalities Detected by Invasive Cardiopulmonary Exercise Testing, 2025, Squires, Systrom et al

    I know next to nothing about invasive C-PET: would deconditioning be expected to contribute to these findings?
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