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  1. Jonathan Edwards

    Ehlers-Danlos Syndrome: Immunologic contrasts and connective tissue comparisons, Islam et al, 2021

    Yes, we have had discussions about the Bragee paper. It really doesn't help. Apart from anything, looking at the figures quoted above there seem to be altogether too many explanations all in the same people. If you have four simultaneous explanations instead of one the likelihood that any of...
  2. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I see this as unduly pessimistic. I remember having post-viral fatigue after EBV that lasted about 6 months. It wasn't such a big deal - I just could not do any sport or weekend activities. At some point I suddenly felt fine. But fir the rest of my life I have understood that what I had was...
  3. Jonathan Edwards

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    The ones nobody has thought of yet. I will have to try and think.
  4. Jonathan Edwards

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    And that could be integrin turtles all the way down.
  5. Jonathan Edwards

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    Yes, this is the problem for pretty much any theory we have so far as far as I can see. Cross out all the known cytokines and then what? I guess one possibility is that CD8 T cells directly annoy the nerve endings in lymphoid tissues through short-range cytokine action (membrane bound?) or even...
  6. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I agree. Trying to force a distinction between Long Covid and ME will end up with people being divided into 'those who had real Long Covid, poor things, who struggled so hard but thankfully got better' and 'those who just could not hack it and couldn't sort themselves out so never got better and...
  7. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    LongCovidPhysio We strongly recommended that all Physiotherapists providing care for people living with #LongCovid use risk stratification before implementing any exercise as rehab. Exclude post-exertion malaise. Exclude potential cardiac symptoms. Listen to the patients story. The mind set...
  8. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    it *is* deliberate. If we make too many comparisons then people will say to LC pts "you have ME" and then box them up and ship them off and forget about them. The longer we keep them separate, the more curiosity there is, the more research will be done and the more we can learn This looks very...
  9. Jonathan Edwards

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    That is right. All you need is one diagnostic sign. Maybe keratoderma or maybe a nail dystrophy. If the signs are less unique in pattern then the diagnosis becomes more a matter of probability but that is standard in medicine, we often work with probables as much as definite. I think it is...
  10. Jonathan Edwards

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    I suspect Jerome got in touch with and worked extensively with quite a few sources for this!
  11. Jonathan Edwards

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    Q fever used to be included in rickettsia but as I suspected has been moved slightly sideways! So I was making the post that ordinary bacteria do not seem to trigger ME, only the rickettsia-like ones that probably have less in the way of innate immune triggers in their cell wall like...
  12. Jonathan Edwards

    Ehlers-Danlos Syndrome: Immunologic contrasts and connective tissue comparisons, Islam et al, 2021

    I am not sure I understand what you mean @mat but I think I disagree. Results are what people choose to publish often after massively distorting reality by the way they collect the results. Bias is ubiquitous in science. The first thing a PhD student has to learn is how many ways they bias their...
  13. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Indeed but to do that all you need is to allocate the review to someone sensible. Not set up a working party? Or just accept that on balance there is no evidence in favour of exercise treatment and forget it just as we tend to forget gooseberry fool therapy and cold shower therapy for ME.
  14. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Let's face it, anyone asked to get involved in this should have pointed out that it was a waste of time and the the review should be junked and that this had been the opinion of the previous editor in chief so why prolong the agony?
  15. Jonathan Edwards

    Ehlers-Danlos Syndrome: Immunologic contrasts and connective tissue comparisons, Islam et al, 2021

    If you read the threads here @mat you will see that some of us having been thinking this through for about five years. From my perspective the conclusion is that EDS has nothing to do with ME/CFS at all and probably nothing to do with chronic fatigue. You seem to be raising the old chestnut...
  16. Jonathan Edwards

    Ehlers-Danlos Syndrome: Immunologic contrasts and connective tissue comparisons, Islam et al, 2021

    As far as I can see it is pretty sceptical about anything beyond the well documented features of the genetic defects.
  17. Jonathan Edwards

    Trisha Greenhalgh on ME/CFS and Long Covid

    I continue to realise why I keep away from twitter. I might have commented on the pseudo-deep position of the hand in the mugshot on the advert.
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