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  1. Jonathan Edwards

    The use of the labels ME, CFS, ME/CFS

    I do wish people would stop putting out misinformation like this. As long as this goes on physicians will ignore people with ME/CFS and refuse to see them in clinics or do any research. The harm done to other people with the disease is immeasurable. The myalgic belonged to another proposed...
  2. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    I do wish people would stop putting out misinformation like this. As long as this goes on physicians will ignore people with ME/CFS and refuse to see them in clinics or do any research. The harm done to other people with the disease is immeasurable. The myalgic belonged to another proposed...
  3. Jonathan Edwards

    Transcriptome analysis of classical blood cells reveals down-regulation of proinflammatory genes in the classical monocytes of LC patients,2025,Fricke

    I would like to think studies like this could tell us something. However, it seems likely that they are simply looking at how old the cells are or how much chemical noise they have encountered while circulating from the body moving about. People talk of classical monocytes, which do not express...
  4. Jonathan Edwards

    Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway…, 2014, Bakken+

    Yes, it would be a statistical weighting factor, along with some other genes, as per DecodeME and age etc.. For any given set up there will be a risk level and it will be a matter of chance - 1 in 100 or 1 in 40 or 1 in 500, whether you get disease.
  5. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    As far as I can see that scheme is just there to provide jobs for NIHR employees and increase the amount spent on bureaucracy. If grants coming in do not fit the assessors' idea of what a grant should be like then the assessors should change their ideas. Increasing the work for applicants by...
  6. Jonathan Edwards

    Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway…, 2014, Bakken+

    I don't think it need have much to do with encountering infections. We have to assume that some pathway in women is easier to subvert. It is likely to be "immune" but if involves an innate immune signals like TLR7 it might impact on susceptibility of brain cells without involving immune...
  7. Jonathan Edwards

    Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway…, 2014, Bakken+

    One thing I think can be said at this point is that although it looks as if the second peak for men was partly an artefact there are also good reasons to think it is still there. It would be easy enough to link two peaks to changes in female hormone levels but if the male peak is real that...
  8. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    I have been encouraged this week that other academic groups will be interested now. The MRC people just do not seem to have the nous to see they have funded a great project that is worth a real Showcase. The meeting yesterday seems to have been set up on the basis that it would just include the...
  9. Jonathan Edwards

    Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway…, 2014, Bakken+

    I think I can say that yes, two peaks come up again. Beyond that I don't want to open this up until Simon and Audrey are happy to do that. The best thing about it is that there is a replication across several different analyses.
  10. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    Maybe try this thread https://www.s4me.info/threads/the-two-age-peaks-in-onset-of-me-cfs.7326/
  11. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    There is a Norwegian study of age at incidence for ME/CFS. There will be a thread here. I may be able to trace it but I am not good at searching.
  12. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    Yes, well I could always be a reviewer. I have no conflict of interest. The data are so elegant that I would like to think others might give it the thumbs up. And Audrey says it is all down to you.
  13. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    I have a plan. Others can have plans if they like, too. People are people. Nothing is rational.
  14. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    At least the dissatisfaction with MRC policy was openly aired at the meeting - in a way it was not on the government research working party.
  15. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    No we don't I suspect. There just isn't anybody who sees the nature of the problem. I can maybe think of one or two. But the one thing you can be sure about with MRC is that it is an inbred clique. The situation can change if the word gets about that there are brownie points to be had for ME/CFS...
  16. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    Maybe but Chris showed us some hard data.
  17. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    The Precision Life presentation I found interesting. I think it was stuff we have seen before but the presenter was clear and I got a bit more of an idea what it was about. I think they have been doing roughly what I hoped Chris would set up when I first saw the results - looking for which...
  18. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    Sonya Chowdhury talked very openly and sensibly about funding and indicated that they were hard at work trying to raise funds for Sequence ME, at present from the USA. It sounds as if the project may be broken up into modules so that funding for at least some can get started although that was...
  19. Jonathan Edwards

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    There was a presentation on neuropsychiatric complications of Long Covid which focused mostly around depression and anxiety. I wasn't sure what to take away from it other than that it was unsurprising.
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