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Reports by the actual PACE trial participants

Discussion in 'General ME/CFS News' started by Countrygirl, Feb 20, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    https://b1ad200d-a-62cb3a1a-s-sites.googlegroups.com/site/pacefoir/pace-trial-participants-experiences.pdf?attachauth=ANoY7cr7KqSV6wrzLdVNHbzEYMLo1stCUb6RRiFy6FXfUnIHe-imQQjqXbUQs_lO_t34lPqogYh1z6sGrsnh-58yGfOUcpRkDProQj5p_FazctL4C7uOn_uICW7IXece06x5Cw4IeeNh1GF74Q4tE7X5D7fNGcrKVOwrf8rxMNGAsGiXoRfu6zB1mxQ1KF4CQb4qp1ZFyGf_z0mDN8_vzvsJY6xRr4CQZKIkmLpMS_ZauTSndzSEF2k=&attredirects=1



     
    Last edited: Feb 20, 2017
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  2. Countrygirl

    Countrygirl Senior Member

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    After reading the above document this letter written towards the end of last year to Prof Crawley, which quotes some of her previous responses, makes for very interesting reading.

    http://www.bristol.ac.uk/media-libr...mation of favourable opinion 24.11.16 (1).pdf

     
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  3. Barry53

    Barry53 Senior Member

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    Not only evidence of detriment/harm, but out of the PACE trial itself.

    Also indicates that the majority of people who dropped out probably would have scored badly, if the trial had been properly run and such factors taken honestly into account.
     
  4. Esther12

    Esther12 Senior Member

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    Interesting stuff, and great for undermining the fears QMUL were trying to generate at the tribunal, but also it's worth being a bit cautious about anecdotes of any sort on the internet. It's possible some of those people have half remembered things from years ago... eg: maybe they were doing some trial that was only similar to PACE?
     
  5. Barry53

    Barry53 Senior Member

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    Agreed. On the one hand such accounts would have to be properly verified. On the other hand there are major privacy issues - would be very wrong to presume that just because someone went public on social media a while back, they would necessarily wish to take anything further.
     
  6. RogerBlack

    RogerBlack Senior Member

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    I somewhat object to the line 'patients with CFS benefited, I had ME'.
    As of course patients may have been diagnosed with either depending on the symptoms just based on date.
    I wonder if as a participant, one can in principle request their information under FOIA.
     
  7. user9876

    user9876 Senior Member

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    It would be under the DPA (Data protection act) which used to and may still have some medical exceptions. There can also be a small charge,
     
  8. trishrhymes

    trishrhymes Senior Member

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    I suspect the patient was simply trying to highlight the fact that some patients had chronic fatigue, but not ME - they may have been aware of other patients in their treatment group who did not have PEM, for example. In such a brief comment, we cannot expect patients to get the terminology and definitions exact. After all, the researchers were using a research definition we don't accept as valid - veering between chronic fatigue, CFS and ME to suit themselves.
     
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  9. Barry53

    Barry53 Senior Member

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    There is also the possible scenario that such a thing might be technically/legally feasible, but might nonetheless put a participant in a stressful situation themselves - the exact personal details are not necessarily for us to know. I think that whatever might be considered, participant well-being has to be the number one priority. If however, it could be confirmed that a participant freely agreed to assist, then any of the other legitimate options should be up for grabs.
     
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