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  1. large donner

    A general thread on the PACE trial!

    The best way around all this is just to drop all the objective measures.
  2. large donner

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

    I have no idea if Dr Shepherd has made the right decision but I was wondering whether he could have accepted the full committee position after requesting from NICE a written position on all other members, their activities and whether they would be made to abstain from votes on GET and CBT? Lets...
  3. large donner

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

    Does this now also apply to Gabrielle Murphy et al and does it stretch as far as being involved in studies etc?
  4. large donner

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

    Having made this strategic decision it is imperative that others on the committee must be held to the same "conflicts of interests" voting rights as Dr Shepherd has had to factor into his decision. I think we can submit our letter to NICE now stating such issues.
  5. large donner

    Cochrane ME/CFS GET review temporarily withdrawn

    What's the point of this paper and when was it written? I don't understand the significance of it to us.
  6. large donner

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

    We don't even know if the other lay members haven't, "been cured by LP". There's even nothing to stop them being LP practitioners for example is there? It seems very strange that we don't know who they are as most advocates would be known via the forums and would probably name themselves too...
  7. large donner

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

    The argument may be obvious to the chair in theory but that doesn't mean it will prevail. It comes down to one thing, if the BPS crowd have a majority of one on the committee they will ignore the argument. Transparent to who though? Will it be transparent to GPs, nurses, hospitals, benefits...
  8. large donner

    Daily Mail article : Are you tired all the time? You could be ill

    At the same time none of that supports the notion of stress being relevant. If we don't know what the virus is we don't know how long the contagious stage is. It could be very limited therefore less like to spread to further geographical areas after an outbreak. In terms of traumatic life...
  9. large donner

    Cochrane ME/CFS GET review temporarily withdrawn

    Didn't Trudie Chalder say during the FOI hearing that they hadn't actually released data to independent groups as they had only released to the Cochrane review team, three of whom were PACE PIs? Was she referring to the Cochrane review by Larun or something else?
  10. large donner

    Cochrane ME/CFS GET review temporarily withdrawn

    I think that just about says it all. Why haven't we ever done the Cochrane review ourselves as a community? Larun was obviously put up by the BPS crowd.
  11. large donner

    The Triumph of Eminence-Based Medicine - Brian Hughes

    Seems like a perfect sweep of public money transferred into high cost service private coffers.
  12. large donner

    The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

    First it was a minority of patients, then it was vexatious patients, then it was people with an agenda along with patients, then it was people who hadn't read the papers, then it was a few badly informed people who had no description because admitting they were academics and doctors would have...
  13. large donner

    Cochrane ME/CFS GET review temporarily withdrawn

    I wasn't referring to any bizarre argument etc I was just asking out of interest. I wanted to know what happens in such a case as we are actually in the position where we need NICE to understand nothing is better than something when the something is based on fake evidence. This seems to be a...
  14. large donner

    Cochrane ME/CFS GET review temporarily withdrawn

    Is anyone aware of any condition that NICE has no guidelines for due the the fact there is no evidence for any treatment?
  15. large donner

    Cochrane ME/CFS GET review temporarily withdrawn

    How the hell can they resubmit, assure sound and well considered peer review and make a decision on republication by the end of November. This whole thing just seems bizarre. From Toveys statement it seems that Larun explicitly expressed that her group would be able to resubmit before the end...
  16. large donner

    The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

    People who have had demonic possession in the past are more likely to develop epilepsy.
  17. large donner

    The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

    Of course these notions can't be beyond the understanding of the average psychiatrist. They are just inconvenient when you are trying to promote a soundbite using implication to reach an uncritical audience via an uncritical journalist. If Michael is so convinced of his arguments lets just put...
  18. large donner

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

    Have you seen any of them critiquing PACE anywhere and speaking out about how appalling the whole thing is? Its not hard there's a mountain of evidence against it now.
  19. large donner

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

    Independent statisticians must be called to testify during the NICE review the review is supposed to be evidence based information not about anecdotal nonsense. "We do this and we do that in our clinics", is not evidence. The published evidence is what is on trial here and now there are...
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