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  1. Jonathan Edwards

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    The whole discussion is surreal. As I understand it, although I admit to being confused by the complexity: Turner Stokes and Wade said that NICE was too harsh on PACW because CRADE is too harsh. The GRADE people are saying no, GRADE is really very forgiving to bad studies (in effect) the...
  2. Jonathan Edwards

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    GRADE works like this. You take a group of people who think that they have a reasonably good appreciation of the risks of methodology being faulty and giving unreliable results. You get them to invent a set of numbers that roughly reflect how they think they decide (although there are nice...
  3. Jonathan Edwards

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

    It's OK, that's because they don't either.
  4. Jonathan Edwards

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

    I think it may be that UK ME patients have managed to find these people out. The hatred reflects a fear that a meal ticket lovingly polished for decades has been shown to be a cheap copy.
  5. Jonathan Edwards

    International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)

    I don't think anything will actually be done.This is just a soundbite. If anything is done it will be the same as for ME - trials of exercise, multidisciplinary clinics with psychologists. Nobody of relevance has decided anything is worth solving. It has just been decided to sound like it. That...
  6. Jonathan Edwards

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    I have just read the comment from GRADE - it is wonderful - it reveals just how little they understand about anything.
  7. Jonathan Edwards

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    I think this was fully expected @Esther12 but it gives us an opportunity to push back on GRADE.I have in mind a formal publication about it once the dust has settled. GRADE is a fiasco. The ME/CFS NICE process may be a useful way to demonstrate that. It looks as if maybe all the GRADE people...
  8. Jonathan Edwards

    Letter in BMJ: Long COVID-19, persistent somatic symptoms and social stigmatisation, Ballering, Rosmalen et al, 2021

    Surely the stigmatisation derives from calling it4 persistent somatic symptoms. If you simply say that someone had Covid and, like a number of others, is still struggling to get back to normal six months later what is the problem?
  9. Jonathan Edwards

    Aripiprazole - Abilify

    I said like CRP - there are lots of others that are also missing. If the Nakatomi study is replicated that would be very interesting but it is a very long way from providing a rationale for using a drug that might be a little bit anti-inflammatory when major anti-inflammatories like steroids...
  10. Jonathan Edwards

    Aripiprazole - Abilify

    On the other hand I find it extraordinarily difficult to understand why anyone without a commercial motivation would bother to test a drug so obliquely relevant to a severe viral response. Strategies for repurposing drugs are very complex. Companies may not want to queer a pitch for a potential...
  11. Jonathan Edwards

    Aripiprazole - Abilify

    Out of patent then?
  12. Jonathan Edwards

    Leadership through crisis: fighting the fatigue pandemic in healthcare during COVID-19, Whelehan et al, 2021

    Whether or not the authors have got input from people with some understanding the authors themselves clearly have none. To mix health care worker burnout with Long Covid is ridiculous. I may still not fully understand ME/CFS but from my own experience of post-viral fatigue suggests that there...
  13. Jonathan Edwards

    Aripiprazole - Abilify

    But we don't have evidence of inflammation in ME/CFS. If Syk kinase was involved I think one would expect some evidence of immune activation like raised CRP and there isn't. It looks to me as if someone with a financial interest in repurposing aripiprazole because it isn't selling much is...
  14. Jonathan Edwards

    Aripiprazole - Abilify

    I suspect that dexamethasone completely covers these targets. I cannot see any need to look for more vaguely a bit sort of anti-inflammatoryish drugs.
  15. Jonathan Edwards

    ME/CFS and gulf war illness patients exhibit increased humoral responses to herpesviruses-encoded dUTP, 2017, Halpin, Klimas, Fletcher, Ariza et al

    I agree. In terms of being relevant to disease causation those graphs show unequivocally the the differences in antibody levels are not relevant. When antibodies are important the differences stick out like a sore thumb. The fact that they have very commendably given scatter plots makes it all...
  16. Jonathan Edwards

    Covid-19 vaccines and vaccinations

    I would go for ibuprofen, certainly.
  17. Jonathan Edwards

    Covid-19 vaccines and vaccinations

    No, quite the opposite. There is a reasonable chance that vaccine to one coronavirus will provide some protection against the next. There is no known situation where it works the other way as far as I know. But I'm only a professor in the department of infection and immunity at UCL.
  18. Jonathan Edwards

    Caught up in Care: Crafting Moral Subjects of Chronic Fatigue, Risor and Lillevoll, 2021

    There is something very distasteful about something like this published in 'Medical Anthropology - almost as if it is a visit to the zoo. It stinks of busybody voyeurism. A study like this is only ethical if it is part of a valid piece of practical clinical research suitable for a medical...
  19. Jonathan Edwards

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

    It looks as if Strain genuinely wanted to distinguish Long Covid from 'pulmonary or cardiac rehab' rather than ME/CFS. But I think the problem goes much deeper. The whole idea that you need a structured exercise programme 'in order to get better' looks to me phoney busy-bodying of the sort I met...
  20. Jonathan Edwards

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

    David Strain @DocStrain · 19 Oct 2020 So to set the record straight. I said Around 2/3rds make a good recovery and live a normal life. To a large number of people this is a hugely debilitating life-long condition. Please accept my apologies for the way it came over. We do listen and are trying...
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