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PACE trial data

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by JohnTheJack, Feb 9, 2018.

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Page 6 of 9
  1. Adrian

    Adrian Administrator Staff Member

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    I think we need to remember that the head of governance for the MRC went out of her way to back PACE. She dismissed complaints about outcome switching and she appeared in the information tribunal to stop data being released. The MRC and in particular their head of governance have been seen to be lacking. I don't think they will be keen to take up this issue either.

    Perhaps when the MRC is gone and the research councils are merged we may get an organisation willing to actually check on issues with the research they are paying for.
     
    Adrian, Feb 12, 2018
    #101
    Barry, NelliePledge, Joh and 18 others like this.
  2. chrisb

    chrisb Senior Member (Voting Rights)

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    Unless something has changed radically in the last nine years the MRC clearly feels it has something to hide. Most here will probably be familiar with this note by Margaret Williams from 2009 but it is worth bringing the oddities discussed to the attention of any to whom it is not known.
    http://www.investinme.org/Article-358 The MRC and Secret Files on ME.htm
     
    chrisb, Feb 12, 2018
    #102
    NelliePledge, Joh, MEMarge and 9 others like this.
  3. Adrian

    Adrian Administrator Staff Member

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    They have SPSS licenses at least. With the fine data I extracted it from a Stata format using python (and I am not a python programmer) the instructions of how to do this are on stack exchange.
     
    Adrian, Feb 15, 2018
    #103
    Joh, Luther Blissett, MEMarge and 10 others like this.
  4. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Stata is a really nice stats package, although it's about 15 years since I used it in anger (as it were). If it would be useful to any of you, I would certainly consider getting hold of the latest version and re-familiarising myself with it.
     
    Lucibee, Feb 16, 2018
    #104
    Joh, Luther Blissett, MEMarge and 10 others like this.
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks @Lucibee - my suspicion is though, that their excuses about the difficulty of accessing the data are such BS that there's no reason for them to lead to anyone putting themselves out getting familiar with Stata's current package, or anything else.
     
    Esther12, Feb 16, 2018
    #105
    Joh, Luther Blissett, MEMarge and 6 others like this.
  6. large donner

    large donner Guest

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    It does make you wonder if this could become a get out trend as soon as an organisation or the government for example gets a request for information they don't want released, they just have to retire or fire the person who would be said to be the information holder.

    It sets a bad precedent.
     
    large donner, Feb 22, 2018
    #106
    Joh, Luther Blissett, Allele and 5 others like this.
  7. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Update.
    This actually made me laugh: I have heard back from KCL and... They don't hold the data either apparently.
    I shall be asking them to review the decision.
    I have now prepared my appeal on the QMUL decision and shall be mailing it at the start of next week.
     
    JohnTheJack, Feb 23, 2018
    #107
    Joh, BurnA, Lisa108 and 25 others like this.
  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    How can they claim that? McCrone is still there, isn't he?

    We're still waiting for the LTFU data on employment outcomes!
     
    Esther12, Feb 24, 2018
    #108
    NelliePledge, Joh, Valentijn and 8 others like this.
  9. JohnTheJack

    JohnTheJack Moderator Staff Member

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    They're being disingenuous. I'd rather not discuss it too much until the process is complete. I'm sure you understand why.
     
    JohnTheJack, Feb 24, 2018
    #109
    NelliePledge, Joh, Jan and 16 others like this.
  10. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Update: the appeal is underway.

    In the mean time, as was pretty predictable, KCL has turned down my request after review and I shall be referring the matter to the ICO
     
    JohnTheJack, Mar 26, 2018
    #110
    NelliePledge, Joh, BurnA and 24 others like this.
  11. Adrian

    Adrian Administrator Staff Member

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    Didn't the TMG minutes stress the importance of this?
     
    Adrian, Mar 31, 2018
    #111
    Joh, BurnA, Jan and 8 others like this.
  12. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Yes, it's crucially important. It's the main reason why the DWP funded the study in the first place!
     
    Lucibee, Mar 31, 2018
    #112
    NelliePledge, Joh, BurnA and 11 others like this.
  13. Sean

    Sean Moderator Staff Member

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    The LTFU results are the only outcomes of real consequence in clinical trials, especially for chronic illnesses.

    The LTFU for primary outcomes is null, however desperately PACE tried to spin it.

    If the LTFU for employment is also null (which I expect it to be), then the psycho-behavioural model of ME being tested by PACE is indisputably a complete bust, those responsible for prematurely imposing it upon sick vulnerable humans are in utter disgrace, and its only remaining value is as a stark warning to future generations. :grumpy:
     
    Last edited: Mar 31, 2018
    Sean, Mar 31, 2018
    #113
    Luther Blissett, NelliePledge, Joh and 17 others like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Apr 30, 2018
    #114
    Woolie, NelliePledge, Joh and 16 others like this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Found this FOI from 2012:

    requests info on recovery rates.
    part of reply:
    "
    The information you have requested is not held. The requested data
    relating to the recovery rates and positive outcomes do not exist. That is
    to say that such analyses have not been done and there is no intention to
    do so. The reason for this is that the analysis strategy has changed from
    the original protocol as described below."
    "
    With regards to the recovery rates: the criteria thresholds for measuring
    recovery in the Trial were changed in the light of more detailed
    consideration of previous published studies (making the Trial’s analyses
    either consistent with these studies or more stringent) and in the light
    of newly published work (on the normal range of fatigue in the U.K.
    population)."

    www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
     
    Sly Saint, Jun 25, 2018
    #115
    MEMarge, ladycatlover, Woolie and 7 others like this.
  16. LightHurtsME

    LightHurtsME Senior Member (Voting Rights)

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    Just catching up on this thread.

    Absurd. As if anyone would believe that an organisation the size of QMUL doesn't employ Access database administrators.

    Inefficient use of taxpayers' money, taxpayer (or someone representing the taxpayer - is there such an organisation?) should be complaning.

    That's the usual lack of respect for anyone they deal with.

    Yes, I know that programmers are not usually particularly keen on documenting their work - but there should be policies and procedures in place and they should be adhered to.

    I find this unbelievable... not in a good way.
     
    Last edited: Jun 25, 2018
    LightHurtsME, Jun 25, 2018
    #116
    MeSci, MEMarge, ladycatlover and 3 others like this.
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @JohnTheJack what happened with this?
     
    Sly Saint, Nov 6, 2018
    #117
    MEMarge, Binkie4 and ladycatlover like this.
  18. JohnTheJack

    JohnTheJack Moderator Staff Member

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    1. The hearing of the First Tier Tribunal for the QMUL request has been set for next Tuesday afternoon. On Friday, QMUL, with the support of the ICO, asked for a full-day hearing. The Tribunal refused this request, but the matter has now been referred to a judge. I await the decision.

    2. The ICO has upheld KCL's claim it doesn't hold the data in terms of the FOIA. I got this decision a couple of weeks ago and sent off my appeal to the FTT yesterday. The ICO's decision is here https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2260044/fs50735928.pdf
     
    JohnTheJack, Nov 6, 2018
    #118
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  19. NelliePledge

    NelliePledge Moderator Staff Member

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    @JohnTheJack would there be any benefit at all in setting up crowdfunding to pay an independent person, or putting out a call for someone to work voluntarily to extract the data so QMUL could no longer use that they don’t have anyone available as an excuse?
     
    NelliePledge, Nov 6, 2018
    #119
    Inara, Sly Saint, MEMarge and 5 others like this.
  20. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I did try a similar line with the ICO who was sympathetic but rejected that approach: an FOIA request is for public release of data and so must be to the world at large and not to, for example, a researcher who would then make the information available.

    The appeal with QMUL has been going reasonably and I think there is a chance, no more, that the Tribunal will order release.
     
    JohnTheJack, Nov 6, 2018
    #120
    Indigophoton, Woolie, Inara and 15 others like this.
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