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  1. Simon M

    ME/CFS Epidemiology - sex ratios, female predominance

    Copied post Bakken: this is the lowest of studies I trust. DecodeME is likely better as bigger and broader recruitment (doesn't need GP referral) at 83% female (Mail in rate sample return was VERY high, reducing bias risk.) Japan/S Korea prevalence. As before, prevalence studies tend to have...
  2. Simon M

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    The severity data comes from DecodeME. (Sex ratio has been discussed elsewhere. I would be very interested to see any good papers showing a significantly lower sex ratio - the best would be from community studies, and they are based on tiny numbers of cases and the error margins on M and F...
  3. Simon M

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    I'm no expert either, and I hope Chris Ponting will reply later. But my take is slightly different to yours. Of course, big samples mean it’s easier to reach the statistical significance. And it would be extremely surprising to discover large effect sizes, given that there are no replicated...
  4. Simon M

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    It's great to see new people getting involved in ME - this is exactly what the field needs, and hopefully there will be more new faces - and more from those just starting to publish in ME. Chris Ponting has got new people intersted.
  5. Simon M

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    I think it’s very important as perhaps the final nail in the coffin of the deconditioning hypothesis. Inactivity accounted for very little of the differences between people with CFS/ ME and healthy controls. Without having comparable data for psychological illnesses such as depression, it’s...
  6. Simon M

    What does deconditioning look like? - ME/CFS Skeptic blog

    Thanks for pointing that out. :) It's what they explicitly state and published in the main biggest GET papers is the basis for GET (and the graded exercise approach of FINE). As you say, who knows what they believe. And those statements are a problem for any future attempts to justify GET...
  7. Simon M

    What does deconditioning look like? - ME/CFS Skeptic blog

    The Pace authors can't do that: they nailed their colours to the deconditioning-causes-symptoms mast. Likewise Fine trial authors. And thanks for the info about the history. I believe the big Edwards big-effect GET trial came directly from the Liverpool pain management approach. Miller is...
  8. Simon M

    What does deconditioning look like? - ME/CFS Skeptic blog

    Helpfully, the Pace trial spells out the central role of deconditioning in their theory of why GET works. It seems pretty clear that if deconditioning doesn't cause the problems, there is nothing to treat, whatever the method. This is from Panel 1 of the Lancet paper (PDF): Graded exercise...
  9. Simon M

    What does deconditioning look like? - ME/CFS Skeptic blog

    I’ve spent nearly a year in total living alongside people who must be even more deconditioned than I am because of severe physical difficulties due to eg MS. And yet their illness is nothing like ME, they have better stamina/less fatigability (despite most needing bed rest during the day) and...
  10. Simon M

    What does deconditioning look like? - ME/CFS Skeptic blog

    You are welcome ;-). ADDED: there was also some great work by a user called biophile (who is well known for some other work he did under his own name). And somewhere, there is a letter from the very much missed Bob (Robert Courtney) in response to one of the Pace papers (Possibly the one on...
  11. Simon M

    A quest to manage CYP with ME/CFS and [LC] under one MDT service – evaluation of a regional centre for CYP ME/CFS and [LC] services, Anbu et al, 2024

    If you read the BACME reports for 2019 and 2023, https://bacme.info/library/surveys/Surveys & Research Archives - BACME the biggest complaint of these MDT clinics (alongside Struggling to get funding – or respect from clinical colleagues) is lack of medical input, particularly for diagnosis...
  12. Simon M

    Efficacy of Repeat Immunoadsorption in Post-COVID ME/CFS Patients with Elevated B2-Adrenergic Receptor Autoantibodies - 2024, Stein, Scheibenbogen

    Thanks for all the great analysis (as usual). And yes, I think the Rituximab open label study showed at least as big an effect, while the blinded follow-up showed none. This study is similarly unblinded with no control, only this time with very short duration where significant improvement...
  13. Simon M

    A Brief Questionnaire to Assess Post-Exertional Malaise 2018 Cotler, Jason et al

    What can we conclude about possible PEM in other illnesses? It looks to me that a significant proportion of people with MS and PPS have symptoms that could be PEM rather than exertion intolerance. ADDED And I think this is very significance, because I don’t think we’ve had any quantitative...
  14. Simon M

    A Brief Questionnaire to Assess Post-Exertional Malaise 2018 Cotler, Jason et al

    MS has very distinct clinical signs, especially with MRI scans (I don't know about PPS). The prevalence of ME is about 0.5%, yet 29% of people with PPS and 22% with MS report potential PEM symptoms, so the I don't think that's a strong possiblity. I see relapses as separate from PEM. In my...
  15. Simon M

    A Brief Questionnaire to Assess Post-Exertional Malaise 2018 Cotler, Jason et al

    That’s a very good point for post polio syndrome given that it’s a post-infectious illness. I Wonder if anyone has ever looked at this? I think it’s less likely for MS. Although EBV appears to be an essential step for development MS, it’s not a direct trigger. As with ME/CFS, glandular fever...
  16. Simon M

    A Brief Questionnaire to Assess Post-Exertional Malaise 2018 Cotler, Jason et al

    Somehow, I missed this paper when it came out, but I think it's important as it deals with the shortcoming of the original DSQ-PEM questions, which also capture simple exertion intolerance. Exertion intolerance is common to many illnesses and those with deconditioning, and one Lenny Jason study...
  17. Simon M

    Increased risk of chronic fatigue syndrome following pneumonia: A population-based Cohort study, Hsu et al, 2024

    Do they show the hazard ratio just for G 93.3? It’s the only Code that might be relevant
  18. Simon M

    Thesis Characterising the Electrophysiological Properties of Cells in Health and Disease [on ME/CFS], 2024, Clarke

    Yes and – in fact, it’s not a very impressive results versus healthy controls. I hope it will be possible to refine this process. It was the scale of the separation in the nanoneedle results that was so striking.
  19. Simon M

    Establishing a "Ground Truth" Resource for ME/CFS

    This is over simplistic, but I think the answer is something like this: Replicated: – about 2/3 of people with ME report they had an infectious onset. – infectious mononucleosis leads to me in a significant minority of people who develop it in their teens/20s. – There is a reduced ventilatory...
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