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  1. Esther12

    Cochrane ME/CFS GET review temporarily withdrawn

    Looks like Cochrane have given in to the external pressure. I'd be amazed if they don't now roll-over for Larun in November. If that review had gone, PACE would have fallen, and a huge number of important people would be left looking very bad indeed. Not surprising that they pushed back hard...
  2. Esther12

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    The people appointing the committee need to judge the applicants to the committee - how else do they decided who to choose? It seems that the people appointing this committee decided that the way ME/CFS patients are treated should be decided upon by those who have a clear self-interest in...
  3. Esther12

    BBC Wales are planning a story on ME

    "She found a place to start her recovery at the..." Phrasing like that is a pretty good way of letting us know that they're quacky. A pretty poor piece.
  4. Esther12

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    Yeah, and then they'll be outvoted. I'm not saying they should quit yet, but I think it will be very difficult for them to do much good unless we can get an entirely new committee.
  5. Esther12

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    Do we know who was involved in selecting the professional members? Whoever it was seems to fully support the culture of bigotry and quackery that has done so much to harm how ME/CFS patients are treated.
  6. Esther12

    Cochrane ME/CFS GET review temporarily withdrawn

    Does anyone know who runs this, or who is likely to be involved with trying to stop Cochrane withdrawing the review?
  7. Esther12

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    Chris Burton!? Please tell me this is some appalling joke.
  8. Esther12

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    This looks absolutely terrible. Who decided that these people we fit to sit on this committee?
  9. Esther12

    PACE Trial application to MRC for funding in 2002

    The 70% rule seems like a likely counter-productive imposition to me. Also, it's very hard for anything to really control for the sort of biases likely to be induced by claims CBT/GET had been found to be effective, and the promotion of models of illness which encourage the view that...
  10. Esther12

    Cochrane ME/CFS GET review temporarily withdrawn

    That sounds bad. It would be appalling if Cochrane caved in after Larun had responded to concerns about her work so evasively, and then when Cochrane's admin felt they had to take action, by helping to promote prejudices about patients in the media. She has shown she is completely unfit to be...
  11. Esther12

    PACE Trial application to MRC for funding in 2002

    Part of the problem is that people use 'pacing' to mean different things, and there risks being a tendency to have 'experts' define pacing, rather that the patients who prefer a self-learned approach that requires no interference from a therapist. There's stuff like this from around the time...
  12. Esther12

    PACE Trial application to MRC for funding in 2002

    I don't think that letter is helpful for AFME, particularly as we know what was to come. Giving "full support" to PACE was clearly a bad idea. Interesting that this June 2002 letter talks about APT as successfully defining the elements that would be recognisable to those who have tried the...
  13. Esther12

    A general thread on the PACE trial!

    I've not looked at Sharpes twitter feed in ages, but he's really not good a discussing things, is he? Too many odd things to be worth posting them all, but thought this one was of a bit of interest: What about the Science Media Centre? eg...
  14. Esther12

    A general thread on the PACE trial!

    LOL at Sharpe saying 'debate is good'. A few months back he was endorsing the view that debate in the House of Lords was a form of harassment, and claiming that exactly the same thing was now happening with Monaghan's debates.
  15. Esther12

    Cochrane ME/CFS GET review temporarily withdrawn

    It's not been withdrawn yet. Still waiting for an official statement from Cochrane about what's going on.
  16. Esther12

    News from Scandinavia

    The fact that Larun's replies were so dire is an important part of the problem!
  17. Esther12

    News from Scandinavia

    Maybe he'd prepared a hard-hitting talk about patients rejecting evidence, and misguided criticism of PACE that fails to recognise that Cochrane, the most respected brand in Evidence-Based Medicine, has concluded that.... oh dear.
  18. Esther12

    David Tuller: Trial by Error. A statement in Support of Cochrane

    Great to have over forty good signatories when this must have been pulled together really quick. Thanks so much to the signatories, and of course to Tuller too.
  19. Esther12

    Cochrane ME/CFS GET review temporarily withdrawn

    This is up in the comments section: Lucibee on October 22, 2018 at 8:51 am There is an error in your report – the quote about “little or no difference” from the main results section is about the comparison of GET vs CBT, and not about GET vs control, which the quote from the conclusions is...
  20. Esther12

    United Kingdom: Dr Suzanne O’Sullivan (BPS neurologist)

    When programmes are presenting the public with a profile of important and influential people, but is not committed to unearthing difficult truths, that's a real problem imo. I realise that I'm not well suited to the BBC!
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