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  1. Adrian

    Very little happening!!

    I think you are right in terms of publications. But I think there is good research going on and it does take time to do it and publish.
  2. Adrian

    PACE trial TSC and TMG minutes released

    But Graham as you get older everyone has problems with walking what your experiencing is just normal - don't you want to get better? If I got a CBT therapist to repeat this to you in sessions over a year would you change your view of what is difficult and change the box you tick? If you did I...
  3. Adrian

    Article by Fiona Fox (SMC) for the Revolutionary Communist Party (c. 1996)

    Sometimes people with absolute certainty do very well. Until they run across people who know they are wrong or their certainty contradicts their usefulness.
  4. Adrian

    What is Action for ME's current (March 2018) position on the PACE trial?

    I assume it becomes an issue for many patient charities with magazines that many of the companies who wish to advertise will be selling alternative medicine, unproven supplements etc. One of the reasons for not taking advertising here. It could get worse with websites where advertising is...
  5. Adrian

    Article by Fiona Fox (SMC) for the Revolutionary Communist Party (c. 1996)

    It does seem to fall into their line of thinking. I think some people are very attracted to the mind over body (and hence matter?) message behind the BPS model. It seems to be a kind of moral belief (I'm a good person so not ill or my mind is strong so I'm not ill).
  6. Adrian

    Article by Fiona Fox (SMC) for the Revolutionary Communist Party (c. 1996)

    I think I had got confused there. There is a mention of Gemma Fox on the wiki page as a sister.
  7. Adrian

    Article by Fiona Fox (SMC) for the Revolutionary Communist Party (c. 1996)

    is that that the same sister that is involved in sense about science?
  8. Adrian

    Article by Fiona Fox (SMC) for the Revolutionary Communist Party (c. 1996)

    I think there is a worrying tone of someone who knows they are right in the face of all evidence and arguments and who intends to continue to preach their rightness to the world. I noticed another phrase used 'there but for the grace of RCP' that is replacing god with the RCP and I suspect in...
  9. Adrian

    Article by Fiona Fox (SMC) for the Revolutionary Communist Party (c. 1996)

    It reads as an early attempt at post truth politics. Basically saying that they need to create a framework for thinking that people will believe. Then dismiss everything that doesn't fit this 'framework' as wrong. But the framework needs to be attractive to pull in the punters. There is no...
  10. Adrian

    PACE trial TSC and TMG minutes released

    The frustration is that it doesn't let us quote them which I suspect is why they won't publish numbers and why the I suspect they also dropped it as a secondary outcome. From the published protocol list of secondary outcomes. Its not mentioned as a secondary outcome in the stats plan and so...
  11. Adrian

    Action for ME's administration and how that affects its views about treatment

    I thought he ran the Cornwall service. I suspect @Russell Fleming can comment.
  12. Adrian

    Statements on conflict of interest of PACE trial TSC

    So none of them actually get research funding in that it goes to the institutions they work for. But they get career advancement, pay rises and possible pay (or someone to do their lecturing duties) from the research funding. I do wonder if the institutions backing these trials should also...
  13. Adrian

    PACE trial TSC and TMG minutes released

    Yes I think fitbits are fashion items these days and record a lot of data so could be very useful for a trial. I believe that the data is not 'medical quality' but that is for diagnostic purposes (e.g. heart rate monitoring etc) rather than for long term trends.
  14. Adrian

    Statements on conflict of interest of PACE trial TSC

    I think both White and Wearden got their chairs after PACE and FINE and I assume they formed a big part of the case. But career progression doesn't seem to be a CoI. I wonder if the pressure to run a big trial and show positive results is a CoI for academics looking for promotions. Has anyone...
  15. Adrian

    PACE trial TSC and TMG minutes released

    No. As far as I remember there are no objective measures being recorded. Primary outcomes are CFQ and Sf36-physical function (I think). There may be some form of school attendance measure (can't remember). That's one of the big objections.
  16. Adrian

    PACE trial TSC and TMG minutes released

    If the PACE PIs didn't think it was worth recording in the minutes then they shouldn't be using it as an excuse in public. It would be interesting to know what was recollected and also whether any questions were asked when that statement was first made. Part if the issue is that when PACE...
  17. Adrian

    PACE trial TSC and TMG minutes released

    But that doesn't tell they what the representative agreed to. To me the point is that the PACE team are making claims and blaming people for things that are not contained in their minutes. It wouldn't surprise me if the AfME representative had questioned the need for all the form filling in...
  18. Adrian

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    Could there be a selection effect in these trials where they are looking for people with higher levels of auto-antibodies hence finding a smaller subset that wouldn't be found anywhere near as often at random?
  19. Adrian

    Jen Brea tweets about U.K. Unrest campaign

    Personally I would avoid using torrent etc. I've always worried that it is a route for hackers to spread malware (although no evidence of this!). I believe youtube are quite quick to take down copyrighted material when someone contacted by someone but I suspect they only police things for the...
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