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  1. Jonathan Edwards

    Pilot study of a parent-based intervention for functional somatic symptoms in children 2024 Etkin et al

    Exactly. They seem to be ignoring the fact that even according to psychologists there are about six completely different ways in which psychosocial states might impact presentation of symptoms - including the one from the overweight psychiatrist who said ME/CFS was middle aged women frustrated...
  2. Jonathan Edwards

    MRC-funded grant proposals on ME/CFS by year, 2003–2023, along with the total number of proposals received that year.

    The effort of sorting out the nine lesions in RA consisted merely of me lying on a sofa for 2 hours and pondering many hundreds of times over a twenty year period!! And some reading of Bywaters and Gardiner. The forum is an ideal place to get lots of people lying on sofas thinking. They should...
  3. Jonathan Edwards

    MRC-funded grant proposals on ME/CFS by year, 2003–2023, along with the total number of proposals received that year.

    Things are an order of magnitude more difficult, it might seem. But science is always about solving a problem that is an order of magnitude more difficult than the last one, except that the difficulty remains much the same because you can benefit from what you learnt last time and technological...
  4. Jonathan Edwards

    MRC-funded grant proposals on ME/CFS by year, 2003–2023, along with the total number of proposals received that year.

    I wouldn't dismiss @Sasha's suggestion, @Simon M. It took me twenty years to work out the critical steps in rheumatoid and the solution was driven by very detailed clinical observation. The clincher was that I had gradually whittled down the pathology of RA to nine specific and apparently...
  5. Jonathan Edwards

    MRC-funded grant proposals on ME/CFS by year, 2003–2023, along with the total number of proposals received that year.

    There are some significant differences there. Altmann is talking of LC proposals that might include ME/CFS I suspect. Almost everything that could be measured in ME/CFS has been measures and found normal. There may well be room to measure some of these things for the first time in LC but the...
  6. Jonathan Edwards

    Why are places allowed to not follow the NICE guidelines?

    I think @Ash has a good point here - I am sure people with ME/CFS are seen regularly by GPs and deliberately not investigated for symptoms that might merit MRI scans because of the diagnosis on the notes. This sort of thing happens all the time and with other diseases too, but I suspect...
  7. Jonathan Edwards

    I genuinely cannot tell if this is CFS or my other health problems

    Hi @chippenstein, We have a rule that we do not advise people on their care as individuals. Nobody here can know just from what you say (which is pretty complicated with five diagnoses already) what your problem is, what to call it or whether it is likely to follow similar patterns to their...
  8. Jonathan Edwards

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    It's a fun dialogue but all this stuff about Long Covid being a vascular disease is just as much garbage as Garner and potentially more harmful, I suspect. Why oh why can't we have someone saying that we don't know? Amy Small was talking about having access to services but as far as I can see...
  9. Jonathan Edwards

    Crowdfunding for David Tuller starts October 1st 2024

    Actually, I am quite happy to say that for the first two. They don't make any pathological sense.
  10. Jonathan Edwards

    Crowdfunding for David Tuller starts October 1st 2024

    It is something like that but I think you are right to point out the asymmetry. Why should anyone bow to the authority of Akiko Iwasaki or David Putrino and not Simon Wessely or Michael Sharpe? Wessely and Sharpe are respected mainstream opinions in their field. The stuff about microclots and...
  11. Jonathan Edwards

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    This wasn’t helping me. I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area. It really does seem that Dr Garner would benefit from some...
  12. Jonathan Edwards

    USA: News from the Bateman Horne Center

    Nice to have a nurse lecturing on neck operations.
  13. Jonathan Edwards

    USA: News from the Bateman Horne Center

    Hopefully we aren't going with it. I have never had a clear idea how to view BHC. This looks like the usual make believe, which I guess does not surprise me that much.
  14. Jonathan Edwards

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    It is interesting to see different psychiatrists give completely different explanations of ME/CFS with great confidence as if their explanation was self-evident to all their colleagues (who turn out to think something else). It needs to be pointed out to them somehow that we don't just make up...
  15. Jonathan Edwards

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    Not earth, brain. If faut cultiver notre cerveau. Et aussi manger les biscuits de dr Pangloss.
  16. Jonathan Edwards

    Using Exercise Therapy for [LC] Without Screening for Post-Exertional Symptom Exacerbation Potentially Increases the Risks for Patients.., 2024, Vink+

    This seems to miss the point that there is no need to screen for PEM because we have no evidence for exercise being of value in anybody who has this sort of illness.
  17. Jonathan Edwards

    The Concept of ME/CFS

    Thanks to all for the comments. I think the last version deals with some at least.
  18. Jonathan Edwards

    The Concept of ME/CFS

    It's definitely axis some of the time, but why should I care? Maybe getting it wrong adds to the niminisation* (sic)? *Referring to a critic's comment about Byron's Francesca of Rimini.
  19. Jonathan Edwards

    The Concept of ME/CFS

    I sent it off after going over it again and making a few more tweaks. I did look at the references but may have missed a few gaps. Fortunately the software usually handles that. It can always be edited online.
  20. Jonathan Edwards

    The Concept of ME/CFS

    Thanks @Sasha. Am I allowed to assume that you are the ultimate proof reader and I can post it online!!? I had better go over it again I guess.
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