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  1. Jonathan Edwards

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

    I forget who the submissions are actually from. But putting in a submission following the draft is a different issue from a legal challenge. It costs nothing. The committee was never going to bow to anyone and I suspect that was known. Briefing lawyers would be quite a task when you have no...
  2. Jonathan Edwards

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

    Who do people think that 'they' would be here? Most of the original crowd seem to be retired. Would a challenge come from Cochrane or McMaster - that would seem to raise the stakes very high. The main casualty is GET and nobody much in the physio world is likely to challenge. Moss-Morris seems...
  3. Jonathan Edwards

    Ken Ware - Neurophysics therapy

    The blurb on his website makes it pretty clear it is a scam. It doesn't make any medical sense.
  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

    So it looks as if Prisma Health Canada might have a lot to lose if the NICE guidelines go through. The next question is why someone associated with the EBM programme at McMaster should now be Clinical Director at a private company selling CBT? Perhaps Prisma thought it would be good to have...
  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

    Prisma Health Canada seems to be a branch of an organisation with branches in USA, Canada, Germany at least. Interestingly, since this is a UK issue first and foremost, Paul Garner seems to be the only UK author on the Busse rapid response. I wonder if he was asked in by Flottorp or Guyatt. The...
  6. Jonathan Edwards

    Effects of Post-Exertional Malaise on Markers of Arterial Stiffness in Individuals with ME/CFS, Bond et al, 2021

    In your case you are referring to shortness of breath on exertion ('SOBOE') being extended. The threads seem to more about people feeling they need to get more air unrelated to exertion. I think calling this air hunger is probably unhelpful since the term has a technical meaning. People with...
  7. Jonathan Edwards

    Effects of Post-Exertional Malaise on Markers of Arterial Stiffness in Individuals with ME/CFS, Bond et al, 2021

    As far as I am aware air hunger is a technical term for the deep respiration seen in metabolic acidosis. Low oxygen tension is actually quite a poor driver of respiration - which is more dependent on carbon dioxide (I was taught). During exercise increased production of CO2 produces a degree of...
  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

    Interesting bit of CV for Dr Busse: Dr. Busse has been active clinically in the management of disability secondary to chronic pain and other medically unexplained syndromes since 1999 and currently serves as the Clinical Director for Prisma Health Canada – a private company that manages chronic...
  9. Jonathan Edwards

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

    Yes, judicial review. I think there was a judicial review after the 2007 guideline that recommended CBT and GET - maybe based on appeal from MEA?
  10. Jonathan Edwards

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

    I don't see it in terms of winning. I see it in terms of achieving the best result possible at the time. I think NICE will be close to that. It may loo a bit messy but if all physios and psychotherapists had to pack their bags and go home the justification for any ME/CFS service would collapse...
  11. Jonathan Edwards

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

    I am not a quitter @Esther12, even if others may be. When things get tough, as they do when you get close to winning (something by Ghandi?) you push through. The RR by Busse et al. is a completely new level of unprofessionalal rudeness to colleagues. I cannot think of any previous situation...
  12. Jonathan Edwards

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

    Yes, I had assumed he was referring to the studies of interviews etc but in what sense was this 'synthesised'. What does that mean? It was commented on but the decisions on guidelines as I see it are based on the formal trial evidence. And yes, the comment about conflict refers to the authors...
  13. Jonathan Edwards

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

    Oh come on @Esther12, you are suggesting that he has so little respect for Barry that he thinks he has 'bowed to enormous pressure'? Peter Barry is a tough cookie. I learnt that straight away. To underestimate someone like Barry is not very clever. It is not very hard to see the reality of what...
  14. 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...
  15. 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.
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