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  1. Jonathan Edwards

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Lets' be fair. Paul Garner, together with his friends at GRADE have impugned the integrity of Peter Barry, Ilora Finlay and myself amongst others in a way that is simply not acceptable in a profession like medicine unless you have some arguments. Busse et al. raise not a single argument because...
  2. Jonathan Edwards

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    I am going through trying to catch up, but if this is glaringly obvious @Esther12 I am wondering if you have lost touch with what is going on! He is supposed to be an expert on evidence. He tweets pseudoscience and unprofessional interpretations.
  3. Jonathan Edwards

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    It is understandable if we assume that these people have no real idea what being a doctor entails in terms of knowing about human relations. That may well be the case but I was asking genuinely interested to know what people thought rather than what was 'understandable'! I am not clear what is...
  4. Jonathan Edwards

    Recursive ensemble feature selection provides a robust mRNA expression signature for ME/CFS, 2021, Metselaar et al

    Yes, afraid so. And if you have to torture someone else's data with statistics to get drops of data out I cannot raise enthusiasm.
  5. Jonathan Edwards

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    What is he referring to? The NICE draft does not synthesise qualitative evidence as far as I am aware? The guideline is based on an assessment of formal evidence. I thought it was Turner-Stokes wanted a different interpretation of the qualitative evidence - not the Garner/GRADE crowd. Why is...
  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

    Yes, I am quite pleased with having managed to be succinct. The GRADE people really do seem to have put their foot in it. If it is now official that GRADE would rate the evidence from PACE as good enough to based guidelines on then maybe NICE are entitled to say no thanks to GRADE in the...
  7. Jonathan Edwards

    Is there good evidence that ME/whatever after an enteroviral infection is very different to states after other infections?

    Looking at the MEpedia page my impression is that we do not have any reliable evidence for enteroviruses being involved in ME. I suspect there was a pre-existing theory that they would be found and so a variety of studies published weak evidence to support that. The tissue staining studies do...
  8. 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

    As I understand it the evidence review was conducted by the full time professional staff at NICE who make use of a standard in house procedure. A number of these staff were present at the prior scoping meeting which several of us attended. The initial assessment was presented to the committee...
  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 wondered about adding a quickie comment something like: The contribution to this debate by Busse et al. is interesting. Turner-Stokes and Wade argued that GRADE is too strict. Busse et al. say no, and (re: assessment of evidence for therapist-delivered treatments for ME/CFS) 'An appropriate...
  10. Jonathan Edwards

    A general thread on the PACE trial!

    @dave30th Patrick Steptoe together with Robert Edwards pioneered in vitro fertilisation from his base as a clinical obstetrician in a peripheral hospital using a laparoscope. Winston, as professor at the Royal Postgraduate Medical School at Hammersmith tried very hard to prevent Steptoe's work...
  11. Jonathan Edwards

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

    I understand your exasperation but maybe we have to accept that reaching Mars is something we know how to do but treating ME and protracted illness after Covid is not. My response was to the suggestion that more will be done for 'Long Covid' than was ever done for ME. I was suggesting that it...
  12. Jonathan Edwards

    Anyone with SVT (supraventricular tachycardia)? Have you used Kardia Mobile?

    I only ever had an old fashioned 24hr halter monitor that stopped working before anything happened. A monitor based on modern technology sounds a good idea. Since my own tachycardia was not documented my cardiologist colleague assumed it was functional. Which of course had a significant impact...
  13. 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

    NICE fail with implementing GRADE guideline methods for CFS/ME-this is in plain sight to any guideline methodologist; makes me wonder whether NICE followed standard guideline procedures to assure consensus Thus speaketh a man from Lilliput. Since when did assuring consensus constitute the...
  14. 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

    At least now it is clear that the ME/CFS community always had to take on all of EBM. Isn't it better for that to be transparent? But the most likely sign that it is going to stop is surely the EBM people starting to complain about what might have seemed something trivial - an ME/CFS NICE review...
  15. 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 other point @Michiel Tack is that what we are seeing now is enthusiasts for bad trials fighting amongst themselves. Turner-Stokes and Wade have upset Guyatt and Garner. Bring it on. The more these people argue with each other the more they will expose the idiocy of their analysis. Guyatt and...
  16. 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 see it as great for people who would like to see unfounded opinions out in the open rather than hidden behind dissembling and obfuscation. And I would not be so concerned about getting Guyatt involved because there are several people clearly more intelligent than Guyatt on the committee who...
  17. Jonathan Edwards

    A general thread on the PACE trial!

    One issue is that far too frequently, we see that many of our colleagues have been vilified. Yes, well he would know, after that vilification he showered on Sir Patrick Steptoe, without whom I would be childless. Winston was not well acquainted with humility.
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