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More PACE trial data released

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by JohnTheJack, May 7, 2019.

  1. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Recall: I am cancelling the link for 48 hours while someone tries to verify.
     
  2. Barry

    Barry Senior Member (Voting Rights)

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    In future cases, would it be allowed under the FOI rules to include in any new request at least one of the previously released pieces of data, so that an alignment verification check could be run? Or even request all of the original data together with the new, so you would have a fully coherent superset of the original data set?
     
    sea, ladycatlover, Annamaria and 9 others like this.
  3. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I'm not sure how that could be worded, but it's worth thinking about.
     
    sea, Chezboo, ladycatlover and 7 others like this.
  4. sTeamTraen

    sTeamTraen Established Member (Voting Rights)

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    Not only should it be allowed, it should be mandatory. But in fact it should be mandatory for the authors not to play silly buggers and pretend that they don't have, somewhere, a single file with all the data in it, which is how everyone works, because it's simple and obvious. (People who have never seen scientific data are often surprised by just how simple it looks, unless it's coming from particle detectors at CERN, and even then, the main complexity is the number of rows.)

    Of course, it's just about theoretically possible that there is no single-file copy of the data left, but at that point, the entire research team should hand back their PhDs and get jobs in McDonald's.
     
    sea, TiredSam, MEMarge and 25 others like this.
  5. Barry

    Barry Senior Member (Voting Rights)

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    Many of us might think they should do anyway ;).
     
    TiredSam, MEMarge, Daisybell and 8 others like this.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    visualising the combination of uniform and customer interface skills ! lol
     
    MEMarge, ladycatlover, Barry and 5 others like this.
  7. JohnTheJack

    JohnTheJack Moderator Staff Member

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  8. rvallee

    rvallee Senior Member (Voting Rights)

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    £5M. Biggest trial of its kind. Trial meeting notes show they planned for it. No excuses.
     
    ukxmrv, ladycatlover, Sean and 3 others like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    I assume missing cells are dropouts? Reasons for dropping out are still withheld?

    Walking tests are abysmal. No wonder they dropped them entirely and pretended it wasn't important. There is so much variation in the initial walking tests. Is it walk as fast as you can? Or walk normally? If it's the latter then you have a natural ceiling of about 600360 and that makes it very misleading. A walk-as-fast-as-you-can could easily go over 1,000700. And it still fails. Pathetic.

    Bit puzzled about the Oxford-caseness binary. Some participants are rated as no longer meeting Oxford criteria yet actually lowered on their walking test. So they must no longer have had any "unspecified fatigue" in the prior 6 months yet are no more functional. Shows how useless the criteria are.

    What a joke this trial is. Sorry but something is massively wrong that this is actually considered serious research. A typical high-school science fair project is more serious than this. Smaller, cheaper, but definitely more rigorous. I can hardly express my disappointment in the entirety of the medical profession that this is actually taken seriously and not laughed out of the room. What tripe.

    Screw it. Time to flex out some programming and do a bit of analysis.
     
    Last edited: Aug 15, 2019
  10. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I've had a very quick look.

    The differences look alarming, I guess I'm going to have to do my own checks, but a few points: It does mostly seem to match up. The vast array of orange in the comparisons with SMC will be because the papers state the adjusted analyses and not the unadjusted analyses that Nick has done. We don't have access to the variables that would enable us to replicate their analyses unfortunately.

    One thing I would like to know though is whether the APT group were scoring significantly higher on the depression rating for HADS. That they "mistranscribed" the data for this in the paper seems a tiny bit suspicious.

    One of my initial criticisms of the original PACE paper was the lack of heterogeneity measures on the baseline data. So maybe the groups were less balanced than it appears.
     
  11. Lucibee

    Lucibee Senior Member (Voting Rights)

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    And here's my summary of the variables, from earlier in this thread:
     
  12. Adrian

    Adrian Administrator Staff Member

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    But they were struggling to convert from Stata formats even though its very easy and there are plenty of examples of how to convert in places like stack exchange.

    Its they way they suggest the data sets are huge when they are quite small. You don't need a server cluster to perform analytics on this data.
     
  13. Adrian

    Adrian Administrator Staff Member

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  14. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Even if they have provided the data in the same order as the Matthees data release, it is shockingly bad data management not to provide any fields on which to do an external check of any merge, such as trial arm. It shows they really don't care about the data. Makes me so cross. :mad:
     
    Last edited: Aug 16, 2019
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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    Zero chance that the data provided to peer reviewers had those problems.

    When there are no consequences to acting like an asshole, assholes will act to the maximum extent of being an asshole, and then some.

    And so far the consequence to acting like assholes for the PACE gang has been in the form of awards, promotions, generous research funding and having their personal grievances amplified in international news coverage. So why stop now? The standard has been set that we are sub-human, so the people who should care about those things don't bother here.
     
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  16. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I very much doubt that the peer reviewers saw any more data than was in the published study. It was fast-tracked - which means they had even less time to scrutinise it than normal (generally an overnight turnaround). And given that those reviewers were likely to be friends of the trial authors anyway...
     
    Chezboo, JohnTheJack, sea and 21 others like this.
  17. Adrian

    Adrian Administrator Staff Member

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    They should be embarassed about some of their claims around data management which suggest that QMUL is simply not fit to run a trial. There are levels of data management that you would not expect a professional organization to fall below and from what I can see they fell below these levels.

    But it wouldn't surprise me if they did this on purpose to make it hard to validate the data.
     
    JohnTheJack, sea, John Mac and 14 others like this.
  18. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Can someone explain the improvements to me? On the third tab.
     
    ladycatlover and MEMarge like this.
  19. Lucibee

    Lucibee Senior Member (Voting Rights)

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    No idea. You'll need to ask @sTeamTraen
     
  20. TiredSam

    TiredSam Committee Member

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    Funny you should say that, I think setting up McPsych is the overall plan.
     

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