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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

    If you mean the unblinded continuation study following the blinded phase 2 ME study then I don't think it would get as far as being assessed by GRADE because it was not controlled. The controlled trial was blinded.
  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

    I think thesis great, because we have Gordon Guyatt, Mr GRADE himself, weighing in and saying his system would have rated PACE as reliable evidence. It would have been easy to see the ME/CFS kerfuffle as a backwater in the evidence-baed world but I think this makes it clear that the NICE...
  3. Jonathan Edwards

    Aripiprazole - Abilify

    As I said before I am not sure I have much more to add, but the situation is complicated. Steroids give people a high so the fact that trials show some symptomatic improvement in the short term does not tell us much. Steroids block all sorts of signals and as I said before I think it is...
  4. 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...
  5. 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...
  6. 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.
  7. 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.
  8. 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...
  9. 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.
  10. 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...
  11. 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?
  12. 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...
  13. 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...
  14. Jonathan Edwards

    Aripiprazole - Abilify

    Out of patent then?
  15. 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...
  16. 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...
  17. 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.
  18. 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...
  19. Jonathan Edwards

    Covid-19 vaccines and vaccinations

    I would go for ibuprofen, certainly.
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