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PACE data request FS50600710 (not the appeal case)

Discussion in 'General ME/CFS News' started by Cheshire, Apr 29, 2016.

  1. Cheshire

    Cheshire Senior Member

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    Last edited: Apr 29, 2016
    Aurator, Invisible Woman and Yogi like this.
  2. Mrs Sowester

    Mrs Sowester Senior Member

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  3. Yogi

    Yogi Senior Member

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    This is not the tribunal case from April 20th
     
    Justin30, Cheshire and A.B. like this.
  4. Mrs Sowester

    Mrs Sowester Senior Member

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    Phoenix Rising gets a lot of mentions.
     
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  5. Cheshire

    Cheshire Senior Member

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    Which case is it so I can change the title?
     
  6. A.B.

    A.B. Senior Member

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    Probably Graham's.

    Funny how critical comments and controversy are seen as evidence that data should be witheld, rather than as evidence that transparency is called for. :rolleyes:

    The whole story is rather surreal in many ways.
     
    Last edited: Apr 29, 2016
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  7. Yogi

    Yogi Senior Member

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    Title is fine.

    I just thought I would add the post in case anyone became confused with the recent tribunal as I initially did on clicking this post.

    Actually you could just add the date of 29 March 2016 and add "ICO" instead of commissioner to be clear given the number of refusals it is becoming confusing and would make easier to find.
     
  8. Dolphin

    Dolphin Senior Member

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    Graham was looking for the data for this graph:
    Chalder2015 fitness and legend.jpg
     
  9. Dolphin

    Dolphin Senior Member

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  10. Cheshire

    Cheshire Senior Member

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    Jeez, I'm part of a conspiracy...
     
  11. Valentijn

    Valentijn Senior Member

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    The first rule of PACE trial is: you don't talk about PACE trial!
     
  12. Cheshire

    Cheshire Senior Member

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    You've been quoted @Valentijn
    http://forums.phoenixrising.me/inde...trial-of-therapies-for-cfs.29882/#post-456881
     
  13. Yogi

    Yogi Senior Member

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    @BurnA ....your quoted....your famous

    Great to see they are avid readers of PR. Now just hurry up and respond to the all the serious issues and questions!!

    http://forums.phoenixrising.me/inde...-is-“not-related”-to-pace-really.41309/page-2
     
  14. A.B.

    A.B. Senior Member

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    I'm glad PACE authors like Phoenix Rising as much as we do. At least one thing we have in common.
     
  15. Cheshire

    Cheshire Senior Member

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    Completely agree with this tweet from @Keith Geraghty
     
  16. Mrs Sowester

    Mrs Sowester Senior Member

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    So patients are supposed to be Expert Patients (or whatever it is) but if they disagree with the doctors they are militants.
    I'm shocked.
     
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  17. A.B.

    A.B. Senior Member

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    Don't take it personally. It's just an excuse, good enough to sound plausible to the ICO that don't have a good picture of the story. They refused Coyne the data as well and he's a respected professor of psychology.
     
  18. Chrisb

    Chrisb Senior Member

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    One wonders what budget is used to pay the salary of whoever is monitoring this site. If it comes out of the five million, perhaps questions might be asked.
     
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  19. BurnA

    BurnA Senior Member

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    :redface:

    Its worrying that they can take that quote and use it as evidence, and completely ignore the topic of the thread from which it was taken.

    ETA
     
  20. Yogi

    Yogi Senior Member

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    Agree but someone here (cannot remember who) said we are not "patients" as we don't get to see any doctors who help or treatments or go to hospital for specialists to see.

    I have also many times in the past referred to myself as a "patient"- I know now erroneously.

    I am going to refer to myself as "AN ME SUFFERER" which is the most appropriate term and we all should use this I feel.
     
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