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PACE raw data available

Discussion in 'Latest ME/CFS Research' started by deleder2k, Sep 21, 2016.

  1. deleder2k

    deleder2k Senior Member

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    Finally:




    Thank you so much, Alem Matthees.
     
    Last edited: Sep 21, 2016
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  2. trishrhymes

    trishrhymes Senior Member

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    Anyone got any idea what the column headings mean?

    trialarm cfqlsov0 cfqbsov0 pcfqls52 pcfqbs52 dgiq52F pfov0 p_pfov52 pgiq52F wtmts.0 wtmts.52 o_ov52cor

    And which treatment arm (1 to 4) is which?

    Edit - I clicked the corners and words magically appeared explaining them, not sure I'll find it again!
     
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  3. flybro

    flybro Senior Member

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    pluto
    where is the original link to the data, i can only find a link from coynes post?
     
  4. deleder2k

    deleder2k Senior Member

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    A box should pop up if you hold your mouse over the column for a second or two.

    Trial arms:

    1 = CBT

    2 = apt

    3 = SMC

    4 = GET
     
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  5. Denise

    Denise Senior Member

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    I haven't seen any other link to the data. (Though it is entirely possible I have missed it.)
     
  6. Sidereal

    Sidereal Senior Member

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    The link Coyne gave is the same link Matthees et al gave in their analysis paper on Virology.
     
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  7. A.B.

    A.B. Senior Member

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    Coyne "accidentally" linked to the UK petition to stop GET in his first tweet about the data. He's trolling the PACE authors.

     
    Last edited: Sep 21, 2016
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  8. user9876

    user9876 Senior Member

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    trialarm Which group people were in 1 GET, 2 APT, 3 SMC, 4 CBT

    cfqlsov0 - Chalder Fatigue questionnaire -'likert' scores at baseline
    cfqbsov0 - CFQ - binomial scores at baseline
    pcfqls52 - (proforma) Chalder Fatigue questionnaire -'likert' scores at 52 weeks
    pcfqbs52 - (proforma) Chalder Fatigue questionnaire -'binomial ' scores at 52 weeks
    dgiq52F - Doctor rated CGI score at 52 weeks
    pfov0 -- sf36 physical function score at baseline
    p_pfov52 -- sf36 physical function score at 52 weeks
    pgiq52F - Patient rated CGI score at 52 weeks
    wtmts.0 - 6 minute walking test distance at 0 weeks
    wtmts.52 - 6 minute walking test distance at 0 weeks
    o_ov52cor - Whether the assessor thought someone met the Oxford criteria at 52 weeks
     
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  9. Denise

    Denise Senior Member

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    Oops! I must have been too focused on the paper - the link didn't register.
     
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  10. Sidereal

    Sidereal Senior Member

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    We're all overwhelmed by this new development.
     
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  11. worldbackwards

    worldbackwards A unique snowflake

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    Earth
    Has anyone checked if the sky's fallen in? I'm keeping an eye out of the window but no news yet.
     
  12. wdb

    wdb Senior Member

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    Has anyone had a good look at this data yet ? I've had a bit of a look over it but did not spot anything particularly noteworthy.
     
  13. Sam Carter

    Sam Carter Guest

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    I'll offer this as a tentative observation (because of uncertainty about the application of the Oxford criteria at 52 weeks), but it appears that the post-hoc changes to the recovery thresholds allowed one participant to "recover" having walked only 206 metres in six minutes, which is about 1.28 miles per hour.

    At baseline they were able to walk 302 metres in the alloted time, so their walking capacity actually declined significantly over the course of the year.

    Worryingly, the clinic doctor rated them as "very much better".
     
    Last edited: Sep 23, 2016
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  14. Jan

    Jan Senior Member

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    [QUOTE="Sam Carter, post: 766977, member: 80

    At baseline they were able to walk 302 metres in the alloted time, so their walking capacity actually declined significantly over the course of the year.

    Worryingly, the clinic doctor rated them as "very much better".[/QUOTE]

    FFS! Unbelievable!
     
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  15. alex3619

    alex3619 Senior Member

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    If this is confirmed we should highlight it as often as possible as proof of how poor the recovery criteria are.
     
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  16. trishrhymes

    trishrhymes Senior Member

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    I've had a bit of a look, and several things struck me

    The scores on the physical capability questionnaire seem to vary wildly when compared with the distance walked, so, as has been mentioned , people could be classed as 'cured' yet able to walk comparatively short distances, and others who scored very low on questionnaire walked further.

    Added to this, about a quarter of each group didn't do the second walk at all. And significant numbers in each group walked shorter distances after a year, yet said they had improved on questionnaire. If those who didn't manage to do the walk had been scored zero and included in the group averages, I suspect a very different picture would emerge. I haven't done that calculation.

    I conclude from this that the data used to draw conclusions is not only invalid, which we already knew because of the problems with conducting the trial, but we're also so inconsistent as to be completely unreliable.

    Since both validity and reliability of statistical data are prerequisites for statistical analyses to have any meaning statistically, let alone clinically, this invalidates the whole trial.

    I think it's a text book case of why psychiatrists reliance on questionnaires to measure physical symptoms such as fatigue and physical functioning is completely bogus. They should have had the patients wearing actometers throughout the trial and done 2day cardiopulmonary exercise tests at the start and finish at the very least.

    What a pile of old garbage.

    And what a travesty of justice for the patients involved who have had their willingness to risk their own health to take part in a trial of untested methods completely screwed up for the sake of the careers of a few greedy, incompetent and totally unprincipled investigators. I won't call them scientists. This wasn't science.
     
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  17. wdb

    wdb Senior Member

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    Yes there is only a relatively weak correlation between change in self-rated physical function and change in distance walked.

    Rplot01.png
     
  18. A.B.

    A.B. Senior Member

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    @wdb how did you deal with missing data? Often the data for the walking test at 52 weeks is missing.

    I'm also looking at the data but haven't gotten past this yet:

    === CBT + SMC ===
    Number of patients: 161
    Patients that completed both walking tests: 122
    Patients that only completed the walking test at 0 weeks: 37
    Patients that only completed the walking test at 52 weeks: 1
    Patients that didn't complete both: 1

    === GET + SMC ===
    Number of patients: 160
    Patients that completed both walking tests: 110
    Patients that only completed the walking test at 0 weeks: 49
    Patients that only completed the walking test at 52 weeks: 0
    Patients that didn't complete both: 1

    === APT + SMC ===
    Number of patients: 159
    Patients that completed both walking tests: 110
    Patients that only completed the walking test at 0 weeks: 44
    Patients that only completed the walking test at 52 weeks: 1
    Patients that didn't complete both: 4

    === SMC only ===
    Number of patients: 160
    Patients that completed both walking tests: 116
    Patients that only completed the walking test at 0 weeks: 42
    Patients that only completed the walking test at 52 weeks: 2
    Patients that didn't complete both: 0
     
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  19. wdb

    wdb Senior Member

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    No point was plotted for cases with missing data.

    This is interesting, can anyone verify,
    SF36 at 52w mean for those who completed the 52w walk = 55.17318
    SF36 at 52w mean for those who did not complete the 52w walk = 46.59766

    if true suggests those who have missing data for the walk follow-up were significantly less fit and so would likely have brought the mean down had they completed the walk.

    also

    Doctor global impression mean
    (completed walk) 2.668142
    (missed walk) 3.388158

    Patient global impression mean
    (completed walk) 2.947939
    (missed walk) 3.622378



    (Please don't take as fact or quote anything posted here until it has been properly verified, we are not professional statisticians)
     
    Last edited: Sep 24, 2016
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  20. trishrhymes

    trishrhymes Senior Member

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    I think one could justify the case for scoring all those who didn't do the walk as walking 0 metres, and including this in the averages. If they were unable to do the walk because they didn't feel well enough, they walked 0 metres. I suspect the researchers encouraged people not to do the walk if they weren't feeling up to walking for 6 minutes so they wouldn't register a low score and bring the averages down.

    I'm intending for my own curiosity to have a look at how many in each group improved by 50 or 100 metres or more and how many went down by these figures, including those who didn't walk at all. But right now I have an appointment with my bed and last night's Strictly Come Dancing, then an hour or so lying still to recover!

    I wonder whether it's a good idea to publish here analyses and graphs of our findings, or whether it's better to just discuss general points and hold off with the detail until, hopefully, Alem Mathees and the others working with him get their next more detailed paper published in a journal for the world to see.

    I'm just a bit concerned that I, for one, might get something a bit wrong, or do a simplistic analysis that doesn't hold statistical water, and someone then spreads it around via twitter and we get hammered for being a bunch of amateurs.... I'd hate to give Wessely, White et al. any ammunition...
     
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