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  1. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I agree but how do we take ME/CFS out on present evidence if we have none? If CBT and GET for ME are withdrawn that will knock the MUS programme but I rather doubt it will impact on the belief in psychosomatic illness. I agree if the debate moves forward to acknowledge that there is no reason...
  2. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I am afraid they wouldn't. The current NICE guidelines is very reasonable on these tests. There is no need to do tilt table tests routinely and I am sceptical they are actually very useful. They don't actually prove what is causing orthostatic intolerance. NK cells are a waste of time. It is now...
  3. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    This I very much agree with. So the key debate is about whether it is legitimate to continue with these. It really doesn't matter what theory they carry along with them. The problem is that they provide a means for GPs to offload patients on to cheap therapists and wash their hands of the...
  4. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    Absolutely, but there is nothing in the NICE guidelines that says PWME must be ignored as hypochondriacs. And it is nothing to do with the 'psychosomatic' debate since if you re a hypochondriac you don't actually have an illness. It is just an extension of the usual laziness that has become...
  5. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    The comment about FND being emotionally generated is intriguing but I don't think you would find any consensus about that amongst doctors who specialise in the condition. And anyway it is only a theory of how FND come about. The term FND describes the clinical category. Edit: Interesting that...
  6. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    There is a horrendous neglect of almost all groups of patients in the NHS. I think ME patients are mostly ignored because they are considered to be hypochondriacs - with nothing wrong with them at all. It seems to me that people are taking 'medical' here to mean involving some structural or...
  7. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I am not sure about that. Functional neurological disorder seems to me to be a very reasonable category for a narrow group of patients with movement disorders or sensory loss that is not explained by any identifiable structural neurological lesion of the sort that would normally explain such...
  8. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I think more likely they are a psychological and a physical therapy designed to alter psychological behaviour. I agree it is moot - but I see so little point in making these distinctions. The important question is whether they work. And I agree that the other important questions are exactly as...
  9. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I agree that raising doubts about CBT and GET for ME have major implications for the CBT and GET industry. But whether ME has served as a quintessentially psychosomatic disorder or not I am not sure and am not sure it matters. We do not know what ME is. The useful debate is not about that. It is...
  10. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    Diane and I have agreed to differ over this. While I think all publicity about the debate is good because we need more people within medicine to think about it, virtually every point Diane makes is, I think, off target. The IOM report has not changed the debate in my view. The problems with...
  11. Jonathan Edwards

    Gary Burgess - The ME show, and updates about Gary's health.

    I forget exactly who Sue Pemberton is. Her comments sound sympathetic but I worry about bits like: What evidence base is there for this either? Why is it the focus of what she does? I am not sure what sleep or fluid has to do with 'supporting' the HPA axis.
  12. Jonathan Edwards

    A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up, 2018, Stubhaug et al

    Yes, I think these results are a nice indication that this positive psychological effect people like Chalder think works through affecting physical functional potential is pure and simple subjective bias aka a 'placebo effect'. If you can switch it on like a light bulb it has nothing to do with...
  13. Jonathan Edwards

    A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up, 2018, Stubhaug et al

    One thing that is striking about all these get up and go therapies is that there isn't a single grain of information that isn't just what any of us could have thought up if we were convinced getting up and going was the answer. In contrast, skilled advice always includes things you didn't...
  14. Jonathan Edwards

    What's behind ME allergies and sensitivities to foods, odors and chemicals?

    I don't think this is that easy. There are drugs that inhibit mast cell signalling to a degree but not very cleanly and anyway you would have to challenge under controlled conditions, with and without. I am not sure what sorts of symptoms you link to the triggers? Mast cell activation will...
  15. Jonathan Edwards

    What's behind ME allergies and sensitivities to foods, odors and chemicals?

    My memory of the NICE guidelines is that coeliac disease is something to exclude before making diagnosis of ME. I don't think neuropathies have anything to do with glial cells - which are in the brain rather than the ends of nerves. I am not sure what you mean by subset - of what? I am pretty...
  16. Jonathan Edwards

    What's behind ME allergies and sensitivities to foods, odors and chemicals?

    I suspect there is quite a bit of muddle here. I don't know who asthma UK are but I suspect they are a well meaning charity that is not necessarily on top of the science (like some ME organisations?). Aerosols can trigger bronchospasm if they include alcohols or other direct irritants and I...
  17. Jonathan Edwards

    What's behind ME allergies and sensitivities to foods, odors and chemicals?

    It sounds as if this is something you rub on, not something you smell. Small molecules can interact with skin to produce immunological sensitivity.
  18. Jonathan Edwards

    Pain and fatigue in primary Sjögren’s syndrome, 2019, Omdal et al

    While pain is usually regarded as a fairly somatic phenomenon, both fatigue and depression have traditionally been regarded as more-or-less of psychological origin. Goodness knows what that is supposed to mean or where it come from. The idea that depression is of psychological origin suggests...
  19. Jonathan Edwards

    What's behind ME allergies and sensitivities to foods, odors and chemicals?

    I think it is extremely unlikely that there would be an immunological reaction to a volatile substance of the sort that mediates food odours. These tend to be of molecular mass in the hundreds . T cells can only recognise peptides derived from proteins with mass in the tens to hundreds of...
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