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Time Change Equals Jet Lag, ME/CFS Style
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PACE Trial and PACE Trial Protocol

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 12, 2010.

  1. Graham

    Graham Senior Moment

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    Dragging the discussion away from the detailed and technical to the frivolous and quirky - the third video is now available. I am not going to make much of an effort to publicise this one yet. The fourth and last one should be ready relatively soon, so I will wait until then.
    Shell, biophile, Sean and 4 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    OMG ... I think the CBT snippet from your video cured me! I will forever more check the appropriate boxes on questionnaires :rofl:

    PS - Page 100 of this thread!
    Bob likes this.
  3. Simon

    Simon

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    A brilliantly clear and powerful explanation, and I loved "the tiny pink cone of difference". Great work, congratulations to Ian too.
    Valentijn and Bob like this.
  4. Bob

    Bob

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    lol, yes, I'm cured too!

    It was the man pointing at me, saying "you're not as ill as you think you are", that did it for me!
    How could I argue with such hypnotic authority!
    I assume he's a (brilliant) psychiatrist?

    Great work, Graham! I think it's your best video yet.
    (And the other two were brilliant, so it's really saying something.)

    Are you going to post it on your thread with the other videos?
    Valentijn likes this.
  5. Bob

    Bob

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  6. Esther12

    Esther12 Senior Member

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    A great way to celebrate 100 pages!
    Bob likes this.
  7. Dolphin

    Dolphin Senior Member

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    Party!!
    Everyone on the dance floor:
    :balloons::);):(:mad::confused::cool::p:D:eek::oops::rolleyes:o_O:devil::ninja::love::cry::rofl::thumbdown::whistle::zippit::snigger::lol::sleep::cautious::alien::aghhh::angel::cat::hug::ill::nerd::redface::sluggish::thumbsup::balloons:
    Simon, Bob and Valentijn like this.
  8. Graham

    Graham Senior Moment

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    As Grey Ham I'm surely matured
    Encrusted in brine, that's assured
    But now CBT
    Has converted me
    To something that truly is cured


    I can't twitch to music, so here's my contribution to the celebrations. I would have offered some of my home-brewed wine, but even Simon turned it down.
  9. Bob

    Bob

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    lol@Dolphin :)

    I think we should save the 2000th post for Graham's 4th video, if he completes it soon!
  10. Sean

    Sean Senior Member

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    "the tiny pink cone of difference"

    Snigger, snigger,....

    Reminds me of an Australian politician who described an opponent as "all tip and no iceberg".

    More nice work, Graham. Thanks.
  11. Valentijn

    Valentijn Activity Level: 3

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    So, it's now 35 days from September 26th ... any sign of this info being released?
  12. Mark

    Mark Acting CEO

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    Whoops of delight!!!

    Only just checked this thread for the first time in a week or two, to find out I've missed the party as usual. But...I'm dancing now, in my mind at least...:D

    Big up to the forum member who achieved this. :thumbsup: Let's have some more FOI requests please, informed by the same factors that achieved success here - I'm sure there's lots more data which would be...interesting...to have on public view, and indeed the entire dataset should be released in a timely fashion according the MRC guidelines, so there's plenty of potential here. I always thought that FOI requests are our best weapon and we need to play that card much more strongly in all areas, so I look forward to seeing the secrets that disclosure may reveal.

    Now...would we prefer that Queen Mary's now comply with the decision, or would we prefer that they fail to do so and face legal sanctions followed by forced disclosure?...
    Dolphin, Bob and Valentijn like this.
  13. user9876

    user9876 Senior Member

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    I've no idea who put the request in or what they have been told. So I just looked at the information commissioners web site which says its gone to an appeal.

    I could read this as a desparation to cover up their results but I wonder if it is just that they don't believe the public have a right to know anything but their spun version of the results. Other things the psychiartits say suggests they hate the idea of public scrutiny of their work.
    Valentijn likes this.
  14. Bob

    Bob

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  15. Valentijn

    Valentijn Activity Level: 3

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    Any idea how long the appeals process takes? Or where we can see that info (maybe it's mentioned earlier in the thread and I missed it)?
  16. Shell

    Shell Senior Member

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    Graham As I am a foggy brained twit these days I really appreciate the videos which are clear enough even for me.
    Looking forward to no. 4. Hope they aren't too draining to make though. There's a lot of concentration!

    I find the fact that an FOI on deterioration rates is needed at all says everything :devil:.

    (I did GET without support. It's cheap because no one helps you - they just tell you what to do. I did it and went from being able to walk around the block on crutches to being unable to walk a few paces from my home.)
  17. Bob

    Bob

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    Hi Valentijn, I don't think anyone knows anything more than what's been posted by user9876.
    If I find out any further info, I'll post it.
  18. Bob

    Bob

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    SF-36 Physical and Mental Health Summary Scales: A User’s Manual.
    Ware JE, Kosinski M, Keller SK.
    The Health Institute, Boston, MA.
    Dec 1994
    http://books.google.co.uk/books/abo...alth_Summary.html?id=L5EuNgAACAAJ&redir_esc=y

    See attachment for full details.
  19. Bob

    Bob

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    This score is better than the mean scores after treatment with CBT and GET.

    This score is better than the mean scores after treatment with CBT and GET.
    This score falls within the 'normal range'.
    Dolphin likes this.
  20. Graham

    Graham Senior Moment

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    The fourth and final video in the set is ready:



    Hope it is up to standard

    Now, what are the chances of Phoenix Rising publishing a link to them on its front page?
    Shell, biophile, Bob and 3 others like this.

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