A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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"QMUL releases the PACE data" (news piece with commentary from #MEaction)

Discussion in 'General ME/CFS News' started by Tom Kindlon, Sep 9, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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  2. Tom Kindlon

    Tom Kindlon Senior Member

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    Groggy Doggy, BurnA, KME and 12 others like this.
  3. PhoenixDown

    PhoenixDown Senior Member

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    I can't wait to show the results to my doctor, who told me the best evidence based treatment for CFS is graded exercise therapy.
     
    Last edited: Sep 9, 2016
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  4. JohnCB

    JohnCB MEow

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    Hi Tom, has there actually been confirmation that Alem Mathees or any one else has received the data that Alem requested under the FoI? The statement from QMUL doesn't actually say that the data has been released.

    This rather tortured language they used does neither say the data has been released nor that the data will be released at any particular time. As I understand it the paper posted on the QMUL website is a PACE reanalysis, not a release of the data points requested by Alem and ordered by the tribunal.
     
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  5. Esther12

    Esther12 Senior Member

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    I think that they have an extra 1-2 weeks to release the data. I don't think that there's any chance they're going to appeal after that statement.
     
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  6. TiredSam

    TiredSam The wise nematode hibernates

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    Agreed, QMUL wrote:

    So they're saying they're going to comply with it, which means releasing the data and not appealing.
     
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  7. simeyss

    simeyss

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    Wooooooohoooooooo!

    Let the reanalysis begin, then bring on the PACE wake! :lol:
     
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  8. Marco

    Marco Grrrrrrr!

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    Excellent. Congratulations to all involved.

    Now, is there anyone suitably qualified lined up to do a reanalysis?
     
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  9. Esther12

    Esther12 Senior Member

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    Compared to White & co? Anyone.
     
  10. worldbackwards

    worldbackwards A unique snowflake

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    My cats are free. Anytime, they say.
     
  11. Amused

    Amused

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    I should imagine there's a few statisticians who would be interested. There's been stuff about it in their area including a conference in USA somewhere recently. Alem might have someone lined up?
     
  12. Sean

    Sean Senior Member

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    :rofl:

    :cat::cat::cat:
     
  13. alex3619

    alex3619 Senior Member

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    Even these guys?


    [​IMG]
     
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  14. Marco

    Marco Grrrrrrr!

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    Joking aside. It's likely to be a very large data set. Someone needs the appropriate software and to know how to use it. Not to mention being sufficiently motivated to put the (unpaid) time in.
     
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  15. user9876

    user9876 Senior Member

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    These days it is a very small dataset. I think 12 variables were requested over 640 patients. In these days of big data that is very small. No need for a hadoop cluster!. Excel will deal with that with no problems (but not a great tool)

    R offers a free stats package that is good and widely accepted by statisticians. I tend to like octave which is an open source version of matlab but that just reflects my technical background.
     
  16. BurnA

    BurnA Senior Member

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    To comply withe the decision will they just release the data requested by Matthees?
     
  17. user9876

    user9876 Senior Member

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    No idea
     
  18. Marco

    Marco Grrrrrrr!

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    Excel/Access might handle it but it would be a major pain especially if the data is held in multiple files and you need a certain amount of nous to know how to deal with missing values. Is there a freeware version of SPSS?

    Other issues are the need to understand the various scoring methods used for the metrics not to mention the non-normal distribution of the general population from which they claim to have derived their definition of 'normal'. Plus you need a background in the original PACE protocol and how it was changed. Not to mention an appreciation of how it doesn't make a lot of sense to have subjective dependent variables in a population where diagnosis is subjective and the therapies under test are designed to change subjective perceptions.

    We could possibly pull this together ourselves but what credibility would that have?

    PS - Any idea what the 12 variables are?
     
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  19. Esther12

    Esther12 Senior Member

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    • SF-36 physical function scores (range 0-100 points) [baseline and 52-week followup];

    • CFQ fatigue Likert scores (range 0-33 points) [baseline and 52-week followup];

    • CFQ fatigue bimodal scores (range 0-11 points) [baseline and 52-week followup];

    • Oxford criteria CFS caseness (does participant meet criteria, yes or no) [52-week followup only];

    • Participant-rated CGI scores (range 1-7) [52-week followup only];

    • Doctor-rated CGI scores (range 1-7) [52-week followup only];

    • 6MWT walking distances (in meters) [baseline and 52-week followup];

    • The group which each participant was allocated to after randomisation (i.e. either to APT, CBT, GET, or SMC).

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

    Looks like the bare minimum to allow recovery rates to be calculated, and 6mwt as an extra.
     
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  20. user9876

    user9876 Senior Member

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    R is a freeware version of s plus which is similar to spss but academics develop new algorithms in it. The alternative is something like using python and pandas which is commonly used by data scientists.

    I think people like Alem and @Tom Kindlon have looked at the PACE protocol and the changes in detail and commented in letters to journals about the changes. So there is the expertise within the patient community. Of course people like White will dismiss anything done by patients forgetting that patients can be intelligent people with education including PhDs in a huge variety of different subjects.
     
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