Search results

  1. J

    Backbench Business Committee for next Parliament debate

    Not wishing to reply on behalf of Linda, but here is the latest. http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/backbench-business-committee/proposals-for-backbench-debates/oral/92638.html Under Q8. The Chair says: We haven’t had any Chamber time for about...
  2. J

    Who said: no getting back to work or drop in benefits after GET / CBT?

    Not sure if this is the kind of thing you mean, but on actigraphy: https://www.ncbi.nlm.nih.gov/pubmed/20047707
  3. J

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

    Yes, agreed. I think we need to be very careful with regards the patient members. It's why I was purposely a bit vague.
  4. J

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

    I find Burton's appointment particularly problematic. He is a MUS expert and not an ME expert. His position on the committee then would seem to presuppose that ME is a MUS. The only evidence they put forward that ME is a MUS is the claim that patients respond to CBT-GET. In other words the...
  5. J

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

    I did find a trace of one of the others that suggested they would have a similar approach to that of the two we know.
  6. J

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

    That's very interesting because this was an argument often put to Wessely about ME: that to determine whether there was an underlying biological cause was not something a psychiatrist was best qualified to do. It was in fact a task for a neurologist, immunologist, etc. It was often phrased...
  7. J

    PACE trial data

    Hehe. Bricks and coasters. Yes, I agree. There is so much more that could be done with everything they collected. It is a real waste.
  8. J

    PACE trial data

    Interesting. From their response, it seems they don't consider they hold this information at all. They'd have to say if they held it but couldn't anonymize it and nor it would it matter if it were part of the main dataset or not. They just must never have collated the information from sheets...
  9. J

    PACE trial data

    They're not really a factor, though I am using them in evidence. The questions are really quite technical and somewhat legalistic, so in a sense what may or may not have been said in a meeting doesn't really matter. There has been no such speculation and it's not part of the case. I think we...
  10. J

    PACE trial data

    Update updated: QMUL hearing now for a date between 21 January 2019 – 1 March 2019, in Swansea. Full-day hearing.
  11. J

    PACE trial data

    No, it's just not how the FOIA works, unfortunately.
  12. J

    PACE trial data

    I did try a similar line with the ICO who was sympathetic but rejected that approach: an FOIA request is for public release of data and so must be to the world at large and not to, for example, a researcher who would then make the information available. The appeal with QMUL has been going...
  13. J

    PACE trial data

    1. The hearing of the First Tier Tribunal for the QMUL request has been set for next Tuesday afternoon. On Friday, QMUL, with the support of the ICO, asked for a full-day hearing. The Tribunal refused this request, but the matter has now been referred to a judge. I await the decision. 2. The...
  14. J

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

    Thank you so much for doing that, Sly. I have real problems taking in information from videos and a transcript is much easier.
  15. J

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

    I've no idea. I've been clinging on to this hope, but know no more than anyone else, so maybe I am clutching at straws.
  16. J

    PACE Trial application to MRC for funding in 2002

    Thanks, that's very interesting. Just to clarify: I don't think it's a particularly damaging letter only insofar as we knew already they had wrongly backed the trial.
  17. J

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

    It would be a way to turn everything around if the last members announced are Charles Shepherd and Jonathan Edwards. Not only would it be quite a coup de theatre by NICE, it would mean that there could be no objections to their membership from the BPS crowd, as NICE could turn round and point...
Back
Top Bottom