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  1. Jonathan Edwards

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    Temperature control is hypothalamic but I am not sure it is autonomic. The response of the hypothalamus involves things like changing thyroid hormone secretion and shivering (which is somatic rather than autonomic). Orthostatic intolerance is often attributed to autonomic dysfunction but there...
  2. Jonathan Edwards

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    Was thinking of a randomly chosen cohort, to see whether the incidence of sensory symptoms in ME could be considered more than one would find by chance in a random selection of people. If not there would be no reason to think it was part of the ME.
  3. Jonathan Edwards

    Over 100,000 posts on S4ME already

    A little rhyming, or not, goes a long way from Eire to Japan.
  4. Jonathan Edwards

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    There should be but I am not sure there is. When Ramsay talked of fatiguability he was obviously noting a real symptom. However, my understanding is that electrophysiological studies do not demonstrate nerve of muscle impairment. The closest thing that I can think of that might explain what is...
  5. Jonathan Edwards

    Over 100,000 posts on S4ME already

    797 or 0.8% I wish Estate Agents would charge as little as that.
  6. Jonathan Edwards

    ME mentioned in Sunday Times (UK) article about BBC presenter Kirsty Young's fibromyalgia

    It just struck me that it would be interesting to know how psychotherapists get on in a culture that believes in fate. I do not want anything I say to be taken judgmentally but what about those who believe that everything is the will of Allah? Or those who drive far too fast with a crucifix...
  7. Jonathan Edwards

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    I think this is misconceived and tends to take things in the wrong direction. It is this sort of analysis that makes me think we should stop referring to 'outbreaks of ME' documented in the past, because they probably tell us nothing important about the illness people suffer from today. The...
  8. Jonathan Edwards

    BMJ columnist Margaret McCartney sums up her content

    Yes, I am afraid her list of calling outs looks pretty tame to me. And where it counts, off target.
  9. Jonathan Edwards

    NICE seeking committee members for Me/CFS guideline

    I will be seeing them next week.
  10. Jonathan Edwards

    NICE seeking committee members for Me/CFS guideline

    Yes, I am pretty sure the original application period was the same as for lay members. It looks a bit as if they have had no takers. Luis Nacul would be a good person to be involved. Or indeed Caroline Kingdon, the research nurse specliaist at LSHTM
  11. Jonathan Edwards

    PACE trial TSC and TMG minutes released

    Paul Dieppe used to be a quality biomedical scientist and was a close friend of mine in the 1970s. He was a hostage in Kuwait in 1990. Some time after that - maybe 1994, he asked me if I was interested in his chair in Bristol as he was moving into administration. I think something major had...
  12. Jonathan Edwards

    PACE trial TSC and TMG minutes released

    Do we know why Dieppe retired? He should have known there were problems from the outset.
  13. Jonathan Edwards

    Acceptance and Commitment Therapy for MuScle Disease (ACTMuS): Protocol for a two-arm randomised controlled trial of a brief guided self-help ACT prog

    Yes, it is complicated. I am being a bit unfair @Woolie, because I have recently published something in Frontiers in Psychology on the structure of mental representations. (https://www.ucl.ac.uk/jonathan-edwards/publications/distinguishingrepresentations.pdf) I think we can be fairly sure that...
  14. Jonathan Edwards

    Acceptance and Commitment Therapy for MuScle Disease (ACTMuS): Protocol for a two-arm randomised controlled trial of a brief guided self-help ACT prog

    This is clearly not the case, would you agree? My thoughts do not involve language at all in general.
  15. Jonathan Edwards

    ME/CFS services in the United Kingdom

    So this rather tells the lie to the claim by psychiatrists that most patients love their doctors and their therapists and the people who cause trouble are a tiny fringe minority of nutcases. It seems that they are expecting quite a lot of patients to be dissatisfied with the behaviour of their...
  16. Jonathan Edwards

    Were historic 'ME' outbreaks really ME?

    Part of the problem seems to be that anyone with an acute febrile illness in the hospital and a whiff of some neurological symptoms got put down as one of the outbreak cohort. But the impression from McE and B I got was that of the rather few cases with symptoms that might have been interpreted...
  17. Jonathan Edwards

    Were historic 'ME' outbreaks really ME?

    I appreciate your fervour @Mithriel, but I think it is important to take the evidence on its merits. As someone trained in neurology I recognise the analysis McE and B make as in line with reliable practice. In contrast, Ramsay's account is vague and pretty implausible at times. To describe so...
  18. Jonathan Edwards

    Were historic 'ME' outbreaks really ME?

    But which is the 'commonly accepted wisdom'? The relevance of the outbreaks for me is that they distract from a useful scientific discussion of ME as it affects hundreds of thousands of people today and thereby distract from useful advocacy. My feeling is that if ME advocacy literature refers...
  19. Jonathan Edwards

    Were historic 'ME' outbreaks really ME?

    I was assuming people would assume the choice was 1-9! It could have been 1-100. The conclusion remains the same!
  20. Jonathan Edwards

    Were historic 'ME' outbreaks really ME?

    I suspect McE and B did not think these were worth commenting on because they would simply suggest that the subjects had a viral illness, as hospital workers are likely to several times a year. I think they were suggesting that the evidence for an encephalomyelitis may have been explained by...
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