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  1. 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...
  2. 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...
  3. 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.
  4. 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...
  5. 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...
  6. Jonathan Edwards

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    Exercise is something of a sacred cow to many – including in the evidence community. So there was a constituency that wasn’t going to be as critical of studies claiming advantages of exercise as they might be for other treatments. Yes, it is interesting to see how surprised people seem to be...
  7. Jonathan Edwards

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

    My thinking is that if people are sensitive to odours this is going to be similar to sensitivity to light and sound, nothing to do with allergy or immunology, purely a neurosensory thing. I am still unclear about whether there are good data showing a real increase in true allergy in ME/CFS. It...
  8. Jonathan Edwards

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

    I think that letter was implying that people with coeliac disease were being misdiagnosed as chronic fatigue syndrome. (There is no mention of ME.) That would be very plausible since coeliac disease often goes undiagnosed and is very likely to make people feel fatigued.
  9. Jonathan Edwards

    ME-seminar in Norway with Lillebeth Larun. LP-paper recommended as preparation literature

    Certainly a shopping list but to me it fails to deal with any of the real issues of ME/CFS. It says nothing about PEM, nothing about unrefreshing sleep, nothing about orthostatic intolerance (which is not a feature of arousal) and so on. The magpie-like collection of bits of 'evidence' mostly...
  10. Jonathan Edwards

    Trial By Error: And Another Prebuttal…

    I think it may be quite interesting to see what lame arguments are raised. Whatever the piece says if it is criticising David it will be an own goal. Criticising a journalist for having said something that a founder member of Cochrane is now endorsing seems a pretty dumb thing to do...
  11. Jonathan Edwards

    Most UK scientists who publish extremely highly-cited papers do not secure funding from major public and charity funders. Stavropoulou et al. (2019)

    They cite each other, but since they all have 600 publications, none of any great interest, none of the papers scores 1000 citations. It is interesting to see that only 1,370 papers scored 1000 citations in the period. I have a paper with 2000 citations in that period. And I never got funding...
  12. Jonathan Edwards

    Prescribing for patients with chronic fatigue syndrome, by Bhatti & Bhatti, Feb 2019

    It is perhaps ironic that the journal 'Prescriber' is not actually for prescribers but for the pharmacists who dish out the prescriptions. Delusions of grandeur maybe? Actual prescribers will have never heard of Prescriber.
  13. Jonathan Edwards

    Literature search on PEM from The Norwegian Institute of Public Health by Lillebeth Larun et al

    He also writes that it is unreasonable if the standard for assessing this report should be different from that of other Cochrane reports. What he did not seem to have twigged to is that the request to withdraw was because it WAS being assessed to the same standards as other reports (except of...
  14. Jonathan Edwards

    Literature search on PEM from The Norwegian Institute of Public Health by Lillebeth Larun et al

    I don't understand the point of this. It took me 40 seconds to do what they say they did. Looking for malaise following exercise is almost certainly pointless. PEM is a term of art where malaise does not mean malaise in another context. And every time one has a research question the relevant...
  15. Jonathan Edwards

    Clare Gerada: influence on UK medical practice and ME/CFS management

    This may be about integration at the higher organisational level rather than the multidisciplinary team but I don't see any sign of anyone sensible involved here.
  16. Jonathan Edwards

    Personality and fatal diseases: Revisiting a scientific scandal, 2019, Pelosi

    Yup, with Rona M-M and the head of NHS England Mental Health for East London MUS services.
  17. Jonathan Edwards

    Prescribing for patients with chronic fatigue syndrome, by Bhatti & Bhatti, Feb 2019

    The Care Quality Commission has a page on 'Dr Shabir Bhatti' Dr Shabir Bhatti Inadequate Also known as Bermondsey Spa Medical Practice We are carrying out checks at Dr Shabir Bhatti. We will publish a report when our check is complete. When it comes to the politics of ME, you couldn't make...
  18. Jonathan Edwards

    Hypothesis piece by Amy Proal, a microbiologist with ME/CFS

    The sad thing about all this field now is that I cannot really perceive that anyone knows what they are doing much. The contrast with the intelligent debate in the 1980s and 1990s is stark. Everyone now studies the same thing, whether mirobiome or 'neuroinflammation' in the context of ideas from...
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