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More PACE trial data released

Discussion in 'PsychoSocial ME/CFS Research' started by JohnTheJack, May 7, 2019.

  1. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    You mean, they claim to have dropped accelerometers due to the load on patients. The evidence from TMG minutes suggests that they actually dropped actigraphy because a Dutch trial had shown it was “not useful” – i.e unlikely to produce the desired positive result. (Newcomers, see @Lucibee ’s blog: Whatever Happened to Actigraphy; https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/)

    But I completely agree with your point. For most of the 27 years that I’ve been unwell there is no way that I could have filled in all the questionnaires and provided all the required feedback. But even at my most severe I would have been happy to wear an accelerometer for as long as necessary. The burden excuse strikes me as a blatant lie.

    I think @JohnTheJack could make a strong case that QMUL’s response to his request has been vexatious.
     
  2. Sean

    Sean Senior Member (Voting Rights)

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    The 'too much of a burden to patients' excuse was obvious nonsense when they first used it, and the TMG notes obtained later prove it was also a lie and, IMHO, scientific fraud (by removing a measure that they knew was likely to provide strong disproof of their hypothesis).
     
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  3. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Very good point!
     
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  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    from a recent article in the Guardian re 'recovery' in mental health, links to this article
    Recovery Model of Mental Illness
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4418239/

    this appears to be the version of 'recovery' that is being applied to ME/CFS
     
  5. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I can't remember who it was, but in relation to the 2 day CPET testing they said that the healthy controls complained but the patients would have crawled over tacks to prove that they had a physical illness.
     
  6. Peter Kemp

    Peter Kemp Established Member

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    I think @JohnTheJack could make a strong case that QMUL’s response to his request has been vexatious.[/QUOTE]

    I find it inconceivable that the raw data was stored in a database or spreadsheet without each participant's data aligned or identified by a code number (like Jack did). As the new data is not aligned it can only have got that way by somebody deliberately jumbling it up or withholding the sorting code. 'Vexatious' is the mildest word that comes to my mind.
     
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  7. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    I am having trouble reading through this. What is the bottom line to the new data? I haven't seen any blogs on it.
     
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  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    It wasn't released in a form that allows it to be combined with the already publicly available data.
     
  9. JohnTheJack

    JohnTheJack Moderator Staff Member

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    QMUL is currently considering 'in good faith' my request for data aligned with the original release.
     
  10. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Good Luck with that!
     
  11. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thanks. I'll update when I know anything more.
     
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  12. Barry

    Barry Senior Member (Voting Rights)

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    Also good luck. Hopefully their notion of "in good faith" accepts the fact it was a bit crass providing a second tranche of the same data set that had no means of aligning with the first they had previously made available.
     
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  13. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thanks. I am slightly hopeful in that I think if they weren't even going to try, they would have said so immediately. But who knows?
     
  14. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Hopefully they will grant your request in good faith!
     
  15. daftasabrush

    daftasabrush Senior Member (Voting Rights)

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    Exaggerated expectation of recovery?
    More nonsense suggesting incorrect beliefs or perceptions.

    Perhaps Mark Vink fabricated his past marathon times?

    Perhaps I fabricated my memory of being able to sit upright for a full day without pain?

    Do I think it's possible to not recognize when I'm well? Not likely!!!
    Frankly I would be delighted to function at the average level of a pensioner. I think I would probably overestimate any improvements
     
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  16. daftasabrush

    daftasabrush Senior Member (Voting Rights)

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    Many thanks @JohnTheJack, and others who helped with this.
     
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  18. NelliePledge

    NelliePledge Moderator

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    These people just can’t see the irony
     
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  19. Barry

    Barry Senior Member (Voting Rights)

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    T'is more than irony. Downright hypocritical.
     
  20. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I have now received a new data file.

    I requested that the data be aligned with previously released data. QMUL say that they are providing me with the information as requested. I cannot verify that to be the case. I believe, however, that these data are aligned with the individual results in the data released after Alem Matthees's successful tribunal hearing.

    https://www.dropbox.com/s/ur8h533uio0x9ej/PACE_July2019.xlsx?dl=0
     
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