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PACE Trial team won't release data they've already published in graph form

Discussion in 'General ME/CFS News' started by Dolphin, Jul 28, 2015.

  1. Dolphin

    Dolphin Senior Member

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    I came across this while doing a search of the whatdotheyknow.com website where UK Freedom of Information requests can be made:

    https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial

    Queen Mary, University of London claim it is a vexatious request.
     
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  2. Sasha

    Sasha Fine, thank you

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    Unbelievable.
     
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  3. Dolphin

    Dolphin Senior Member

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    This relates to this graph. CBT and GET had the lowest (i.e. worst) fitness scores at 52 weeks
    Chalder2015 fitness and legend.jpg

    Time points are baseline, 12 weeks, 24 weeks and 52 weeks.
     
    Last edited: Jul 28, 2015
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  4. anciendaze

    anciendaze Senior Member

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    I think the graph speaks for itself. Nothing they did had much effect, and specialist care alone looks good.

    This is worth millions of pounds?
     
  5. worldbackwards

    worldbackwards A unique snowflake

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    Seems like the kind of thing they could jot down on the back of a fag packet.
     
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Maybe if someone stretched the graph to show the differences more clearly, the approximate improvements and deteriorations could be roughly estimated. The graphical form and the scales of the axes are badly chosen.
     
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  7. A.B.

    A.B. Senior Member

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    I'm working on approximating the numerical values. Stay tuned.
     
    Last edited: Jul 28, 2015
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  8. Daisymay

    Daisymay Senior Member

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    Excellent reply from Graham to the Queen Mary rejection of his FOI request on the grounds that it was vexatious:

    https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial

    From: Graham McPhee

    28 July 2015

    Dear Queen Mary, University of London,

    Please pass this on to the person who conducts Freedom of
    Information reviews.

    I am writing to request an internal review of Queen Mary,
    University of London's handling of my FOI request 'Fitness data for
    PACE trial'.

    I was very surprised to find that my request has been turned down
    on the basis that it was "vexatious". I looked at the guidelines
    and found: "The key question to ask yourself is whether the request
    is likely to cause a disproportionate or unjustifiable level of
    distress, disruption or irritation. Bear in mind that it is the
    request that is considered vexatious, not the requester." The data
    in question has already been calculated and is a fundamental part
    of the analysis: it has been used as the basis of a low-resolution
    diagram in the study. If publishing such a diagram is acceptable,
    how can requesting publication of the actual numbers on which it is
    based be vexatious?

    As a mathematician with ME, I take a keen interest in research into
    the illness, and, to me, data speaks much more convincingly than
    words. I am on record
    (http://www.bmj.com/content/342/bmj.d3780...) as
    recognising the importance of the PACE trial, but not accepting the
    validity of its analysis and conclusions. There is no logic in
    turning down my request according to the guidelines: I can only
    assume that my scepticism of the conclusions of the PACE trial, and
    my wish to analyse the data for myself has played a part here. Such
    a reason is explicitly denied in the guidelines: a refusal must
    relate to the information required, not the person making the
    request. In the scientific world it is considered important for
    data to be available and to be analysed by supporters and sceptics
    alike, in order to arrive at the truth. Sadly that does not seem to
    be the situation here. As such I believe the refusal more closely
    fits a description of "vexatious".

    A full history of my FOI request and all correspondence is
    available on the Internet at this address:
    https://www.whatdotheyknow.com/request/f...

    Yours faithfully,

    Graham McPhee
     
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  9. A.B.

    A.B. Senior Member

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    @Graham the approximate real values of the data points:

    Code:
    Baseline:
    
      SMC: 1.84375  (1.640625 - 2.078125)
      GET: 1.75     (1.46875  - 2.046875)
      CBT: 1.78125  (1.5625   - 2       )
      APT: 1.609375 (1.46875  - 1.765625)
    
    At 52 weeks:
    
      SMC: 2.03125  (1.6875   - 2.375   )
      GET: 1.859375 (1.671875 - 2.046875)
      CBT: 1.875    (1.59375  - 2.140625)
      APT: 2.015625 (1.640625 - 2.375   )
    I used the GIMP graphics program with guides and the measurement tool. Any of these values is at most off by a pixel which would be 1/64 (unless I messed up positioning of the guides). I hope the formatting works for everyone.
     
    Last edited: Jul 28, 2015
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  10. cfsStevew

    cfsStevew

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    What values are the Y axis?
     
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  11. Valentijn

    Valentijn Senior Member

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    Approximated change from baseline to 52 weeks:
    SMC = +0.1875
    GET = +0.109375
    CBT = +0.09375
    APT = +0.40625

    That seems like a pretty big increase in the pacing group, compared to the GET and CBT groups. Any chance it's statistically significant? That might explain their strong opposition to providing the actual figures, and making the differences look miniscule by using a crappy graph.
     
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  12. A.B.

    A.B. Senior Member

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    There also seems to be a curious ceiling effect in the GET group. The high end of the range at baseline is exactly the same as the high end of the range at 52 weeks (both 2.046875). At least that is the final outcome, at 12 and 24 weeks GET fares a bit better. But maybe I'm trying to read too much into it.
     
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  13. Sidereal

    Sidereal Senior Member

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    What are the sample sizes in each group?
     
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  14. user9876

    user9876 Senior Member

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    The other interesting thing about the APT group is there starting position is quite a bit lower with the higher bound (is that 1SD?) being around the level of the other groups. Obviously they didn't control for this.
     
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  15. anciendaze

    anciendaze Senior Member

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    Oh, by the way, has anyone noticed the obvious about the hypothesis that false illness beliefs and deconditioning produce chronic fatigue syndrome? There were changes in subjective measures, but this had essentially no effect on objective measures of physical condition, except for the questionable 6-minute walk test where about 1/3 of participants declined the test. (This leaves the result open to the criticism that they are measuring stratification of the cohort, so that those who are in worse condition are more likely to decline the test.)

    Bottom line: the original "false illness belief" hypothesis has been falsified by this study.
     
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  16. A.B.

    A.B. Senior Member

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    Clearly the problem here are "false somatisation beliefs".
     
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  17. Hutan

    Hutan Senior Member

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    How was 'fitness' defined?
     
  18. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Looking at the trial protocol it is a "step test"
    The reference linked there goes to this:
    http://www.ncbi.nlm.nih.gov/pubmed/11380757/

    So it appears to be...a VO2 max test!

    No wonder they are hiding the results from this.
     
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  19. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Time to start demanding a published retraction of their dubious conclusions?
     
  20. user9876

    user9876 Senior Member

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    Its not a Vo2 max test but its a test that someone developed to give roughly the same results but which is easier to do and hence more appropriate for people with chronic illness or as people age.

    I believe it involves repeatedly climbing on a step (i think for a fixed number of times) and then the results are modified by body mass (weight) and final heart rate.
     
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