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  1. Simon M

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    Does anyone know why the areas with the highest prevalence are: Norfolk & Suffolk, Cornwall and the South West? See Fig 1B below, prevalence by ICB (integrated care board - which doesn't align that well with NHS trusts), sex and white/other-than-white Cornwall had Anthony Pinching, consultant...
  2. Simon M

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    This paper hasn't been peer-reviewed yet, but I'd like to make a few comments. I think this is the largest ME dataset in the world, with 100,000 people given a diagnostic code of G 93.3 (postal fatigue syndrome, the ICD code that most closely resembles ME, CFS). The F:M ratio of 3.9 isn't too...
  3. Simon M

    Impaired oxygen sensitivity of red blood cells from ME/CFS, Wan NIH talk 2024

    Some notes on Jiandi Wan's very interesting presentation Great to have an existing expert in a technical field start working on MEcfs. I think we need much more of this. It makes sense that RBCs are sensitive to local oxygen concentration becoming more flexible and so moving faster through...
  4. Simon M

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    #MEA choosing to rely on the CDC study because it is the 'latest data' doesn't sound like the right call to me: we need credible estimates, and at 1.3% this is not: I think we would notice if 1 in 76 people had MEcfs. The CDC data is suspect: 1. It asked people if a medic had told them they had...
  5. Simon M

    Trial Report Mismatch between subjective and objective dysautonomia, 2024, Novak, Systrom et al

    I'm confused. I thought that postural hypotension and POTS could be objectively measured e.g. by the NASA lean test.
  6. Simon M

    Trial Report Mismatch between subjective and objective dysautonomia, 2024, Novak, Systrom et al

    These questionnaires are usually used to support Conclusions that patients (including individuals) have objective, physiological, autonomic problems. And I don’t think it’s now safe to draw such conclusions. TBH, I’d always assumed that someone had done this kind of work originally to validate...
  7. Simon M

    Opinion Editorial: Fatigue: Physiology and Pathology, 2024, Kujawski/Zalewski/Hodges/Nijs/Newton

    Thanks. I struggle to see in such a small study how these findings undermines the idea of a distinction between peripheral and central fatigue.
  8. Simon M

    Opinion Editorial: Fatigue: Physiology and Pathology, 2024, Kujawski/Zalewski/Hodges/Nijs/Newton

    This is a great topic (I haven't read any of the papers yet). The physiology of pathological fatigue in general isn't well understood (it's not sorted for healthy fatigue either). Presumably, progress in these areas would help the understanding of MEcfs. 1.8. In skeletal muscle physiology...
  9. Simon M

    Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

    I can see that as a reason for men to be slower in seeking diagnosis (if it’s true). But most case definitions of ME requires a 50% reduction in functional capacity. If that has happened, which usually means losing your job or reducing hours with huge financial impact, as well as massive impact...
  10. Simon M

    Examination of Single Nucleotide Polymorphisms in Acetylcholine Receptors in Chronic Fatigue Syndrome Patients 2015 Marshall-Gradisnik et al

    It would take a bit of time, it wouldn’t be too difficult for someone with the right skills. Simply applying Bonferroni to this data, the adjusted value would be 0.00013 (they used two cohorts and only 396 SNPs were common both). The closest value here is 0.0028, more than 20 fold higher...
  11. Simon M

    Examination of Single Nucleotide Polymorphisms in Acetylcholine Receptors in Chronic Fatigue Syndrome Patients 2015 Marshall-Gradisnik et al

    They screened, 464 SNP’s, and the study make no mention of correcting for the many comparisons (they said they set the value at p less than 0.05: they would be talking about q values if they had corrected for multiple comparisons). This looks like a study of false positives (this team has made...
  12. Simon M

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    Thanks. Unfortunately, I don't have the energy to tackle another thread. Do you know if it covers research that addresses the issue of PEM after mental triggers vs PEM after physical ones?
  13. Simon M

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    Very true, but I wouldn't expect the same person to experience PEM differently post phy or mental triggers. Especially as PEM is usually seen a (body) global issue, not something localised such as muscle pain This is why I think we new evidence: we know so little about PEM, not least the...
  14. Simon M

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    I broadly agree with your very broad and important point, and Occam's Razor is with you. Though I wouldn't completely rule out there being independent types of mental and physical PEM (because a small but significant proportion of pwme have no mental-triggered PEM and some here report mental...
  15. Simon M

    Excessive Intracellular Acidosis Of Skeletal Muscle On Exercise [in] Post-Viral Exhaustion/Fatigue Syndrome: A 31P [NMR] Study, 1984, Arnold et al.

    Are these Newton papers relevant? I haven't looked at them for years and you might well be aware of them in any case. I'm not sure this work was ever followed up properly. https://scholar.google.co.uk/scholar?q=newton+cfs+31-p&hl=en&as_sdt=0&as_vis=1&oi=scholart
  16. Simon M

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    Maybe I missed you doing so earlier, but could you say more about this expert interpretation?
  17. Simon M

    Published poems by Veronica Ashenhurst, who has Severe ME

    Published here. No prizes for guessing who the S.M. of the poem is, and I was deeply touched to have such a wonderful poem written for my birthday. Thank you, Veronica.
  18. Simon M

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    I'm very interested in the similarities or not between brain and body PEM triggers. But I'm not sure your point necessarily follows given that ME is such a heterogenous illness and many researchers it's more than one illness. Neurocognitive issues are incredibly common, typically over 90%...
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