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  1. Simon M

    Development and measurement properties of the PEM/PESE activity questionnaire (PAQ), 2023, Davenport et al

    But does that study have an opportunity for feedback (I bailed out because the questions didn't fit my experience)? Otherwise, I think it's pointless; the questionnaire needs fixing before this becomes a 'validated' instrument that has been developed without proper patient input.
  2. Simon M

    Development and measurement properties of the PEM/PESE activity questionnaire (PAQ), 2023, Davenport et al

    I gave up on the questionnaire because 1. triggering options included toxic mould but not viral/other infection (only specific ones that most will not be familiar with) 2. none of the "what's most important to you" questions really fitted what I would have put, and the questions/answers about it...
  3. Simon M

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

    I'm still hoping that GWAS will provide powerful clues about what is causing ME/CFS (because genetics is ideally suited to identifying causation). That said, I think this study is very interesting: Ihad the impression that Wust and colleagues know what they are doing in this field (though I...
  4. Simon M

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

    Great result - don't know if you need a reminder still? I think RW would find the discussion interesting, particularly about creatine kinase and the recent post by @SNT Gatchaman That's a good point about the modest impact of thinking on overall brain energy consumption. But maybe that's not...
  5. Simon M

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

    Interesting comment from Alan Carson, President of the FND Society, asking for a bedrest comparison. He should read the analysis here. someone here (@ME/CFS Skeptic ?) has already pointed out the long Covid patients averaged 4000 steps a day: bedrest is not a relevant comparison. Plus, as Rob...
  6. Simon M

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

    I hope others can help me understand this paper as it would take me a long, long time to the full thing. It appears to be very thorough. The findings are eye-catching but also report numerous negative findings, including the absence of microclots in capillaries (I'm concerned when everything...
  7. Simon M

    Identification of CD8 T-cell dysfunction associated with symptoms in [ME/CFS] and Long COVID and treatment with a nebulized ... 2023 Gil et al

    As you can see below, these results from stimulated frozen CD8+ cells (vs fresh in this study) show no difference : Yes, that makes sense figure 8 Figure 8. Production of cytokines by T cells in response to stimulation in vitro. PBMC from mild/moderately affected ME/CFS (ME-M: n = 76)...
  8. Simon M

    Compilation for ME articles in 2023

    Sorry, I had completely misunderstood things, but it’s still very good news!
  9. Simon M

    Funded: Role of pharmacological activity of autoantibodies in ME/CFS, Dmitry Veprintsev

    It seems a long shot, but it's good that they are not just looking at antibody binding but also at whether or not the binding affects the activity of the receptors they bind. Via @Sid They don't lack ambition.
  10. Simon M

    Compilation for ME articles in 2023

    these are amazing results, and show the value of all the effort to compile the news and brief. out of interest, are they based on links back to the news in brief page?
  11. Simon M

    Identification of CD8 T-cell dysfunction associated with symptoms in [ME/CFS] and Long COVID and treatment with a nebulized ... 2023 Gil et al

    I was thinking n = 30 to 40 per disease group, not hundreds. Presumably processing, fresh blood isn’t so difficult for an immunology lab? And they were providing the assay as suitable for adapting for clinical use, which would be at scale. I can’t think of this research can advance without...
  12. Simon M

    Identification of CD8 T-cell dysfunction associated with symptoms in [ME/CFS] and Long COVID and treatment with a nebulized ... 2023 Gil et al

    The CD8 results do look interesting, despite the small sample size (MEcfs=12, LC=8, HC=10). If this replicates it would be a story, and replication attempts should be easy enough. Needs to be on a much larger and independent cohort, of course. The text's claim that MEcfs/LC stimulated results...
  13. Simon M

    Muscle fibre characteristics and lactate responses to exercise in chronic fatigue syndrome 1998 Lane et al

    That's a stunning result, especially from such a large sample (n=105). And very significant, as @Sean says. I thought BPS enthusiasts have now given up on the deconditioning theory. IIRC, the much-missed Bob wrote a devastating journal letter that demolished it. Interetsing, but the data on...
  14. Simon M

    2023: looking back on a year of ME/CFS research

    This is your usual brilliant work and fabulously helpful to someone too ill to follow research much this year. Thank you. Comments rather than corrections: Just a note that the study did include an extensive questionnaire to check if people met IOM criteria and/or CCC according to symptoms, inc...
  15. Simon M

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

    that was done quite a few years back by both Ron Davis and Ian Lipkin. Null result in both cases, which is probably why neither group public published the work, though the results were shared publicly.
  16. Simon M

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

    It’s certainly a challenge, but I think we can get somewhere. I don’t know how much T cell, history approach will help if common infections are a trigger (as they appear to be), because most people will have a history of many common infections. Though the T cell work is amazingly cool. And it...
  17. Simon M

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

    That is the intriguing prospect, though this is a cross-sectional study. I would say the former as my instinct is to believe the patient, particularly when they have a 'don't know' alternative. Plus there is good evidence this is a often a post-infectious illness: Agree that the final option...
  18. Simon M

    £622,000 grant to improve diagnosis and treatment for ME/CFS and Long Covid

    Precision Life are an interesting company specialising in computational biology. They have developed a new way of analysing existing genetic data called combinatorial analysis. Instead of looking to see a particular DNA difference is linked with disease, it looks to see if combinations of DNA...
  19. Simon M

    £622,000 grant to improve diagnosis and treatment for ME/CFS and Long Covid

    This is an Innovate UK grant, made to speed up the shift from biological findings to drugs by encouraging companies to get involved early and take risks Innovative precision medicine project to diagnose ME/CFS and long Covid more accurately and find the most appropriate treatment options for...
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