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SMILE trial data to be released

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by JohnTheJack, Mar 12, 2019.

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  1. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I wasn't aware of CFI. Thank you. I'm glad someone's minding things.
     
    Snowdrop, Mar 13, 2019
    #61
    daftasabrush, MSEsperanza, ladycatlover and 3 others like this.
  2. Alvin

    Alvin Senior Member (Voting Rights)

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    Faith
     
    Alvin, Mar 14, 2019
    #62
    MSEsperanza, andypants, rvallee and 1 other person like this.
  3. dave30th

    dave30th Senior Member (Voting Rights)

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    And that claim was ridiculous, since she swapped the outcomes in a way that produced the better results.
     
    dave30th, Apr 13, 2019
    #63
    daftasabrush, ladycatlover, Sly Saint and 7 others like this.
  4. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    Maybe this chap. Seems to operate out of both London and Bath.

    https://lightningprocess.com/find-a-practitioner/

    upload_2019-4-13_18-29-23.png
    upload_2019-4-13_18-28-1.png
     
    Barry, Apr 13, 2019
    #64
    JohnTheJack and ladycatlover like this.
  5. TiredSam

    TiredSam Committee Member

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    TiredSam (ordinary)
     
    TiredSam, Apr 14, 2019
    #65
    Hutan, Barry, Joel and 2 others like this.
  6. Trish

    Trish Moderator Staff Member

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    ?????
     
    Trish, Apr 14, 2019
    #66
    Wonko, Barry and ladycatlover like this.
  7. TiredSam

    TiredSam Committee Member

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    I just couldn't bring myself to follow Alistair Gibson (advanced)'s example. Sorry, just don't have the confidence to claim that level of wonderfulness. It's not a qualification I'd heard of before, so it must be very exclusive.
     
    TiredSam, Apr 14, 2019
    #67
    Daisybell, JohnTheJack, Wonko and 7 others like this.
  8. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I think you deserve the advanced status for your amusing and insightful comments.
    Horizontal Superman (advanced)
     
    MEMarge, Apr 14, 2019
    #68
    ladycatlover, Hutan, JohnTheJack and 10 others like this.
  9. daftasabrush

    daftasabrush Senior Member (Voting Rights)

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    motivated intruder? They tried that one with the PACE trial...
     
    daftasabrush, Apr 16, 2019
    #69
  10. daftasabrush

    daftasabrush Senior Member (Voting Rights)

    Messages:
    189
    Excellent result. I realized the children will all be adults by now, given 8 years have passed.

    I just want to check a few points
    - Bristol did not claim researchers might be harassed if data was released?
    - there were no attempts at "character assassination" of "activists" like the "borderline sociopath young men" comment from the PACE trial?
    - are your views correctly described in the ruling?

    Also any witness evidence? I couldn't say any.

    Is there a further appeal step they could take before being forced to release the data?
     
    daftasabrush, Apr 16, 2019
    #70
    MSEsperanza, MEMarge and JohnTheJack like this.
  11. Adrian

    Adrian Administrator Staff Member

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    The motivated intruder is a standard test applied by the ICO but I think it assumes no illegal action (otherwise the data could just be obtained anyway - especially given universities IT security is often quite poor).
     
    Adrian, Apr 16, 2019
    #71
    MSEsperanza, MEMarge, JohnTheJack and 2 others like this.
  12. JohnTheJack

    JohnTheJack Moderator Staff Member

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    JohnTheJack, May 1, 2019
    #72
    Marit @memhj, 2kidswithME, Barry and 27 others like this.
  13. JohnTheJack

    JohnTheJack Moderator Staff Member

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    1. They did refer to this but it was not part of the exemptions they claimed.

    2. No.

    3. Not got all the nuance, but it's how people tend to understand what we say.
     
    JohnTheJack, May 1, 2019
    #73
    MSEsperanza, MEMarge, Daisymay and 1 other person like this.
  14. Trish

    Trish Moderator Staff Member

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    At a very quick glance at that data, there seem to be significant numbers of missing data, data that makes no sense (like someone scoring 100 on SF PF and 0 on CFQ), people who weren't really sick in the first place (over 80 on SF PF), and people who misinterpreted the CFQ (on the 33 point likert scale, a healthy person should score 11, yet some here score much less).
    Edit to add: And several people scoring things like 22.22 on SF PF which as I understand it goes in steps of 5.
     
    Last edited: May 1, 2019
    Trish, May 1, 2019
    #74
    Barry, MSEsperanza, MEMarge and 10 others like this.
  15. Esther12

    Esther12 Senior Member (Voting Rights)

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    100 on SF36-PF and 0 on CFQ would be someone filling in the forms as positively as possible - that makes sense doesn't it? Or do you mean at baseline?

    Sometimes with SF36-PF when there is no answer to a question they use the average score to the answers given rather than counting the missing answer as zero.

    I can't see the school attendance data that's based on school records - that was their pre-specified primary outcome, so getting results for that is pretty key. Am I being an idiot or is that data missing?
     
    Last edited: May 1, 2019
    Esther12, May 1, 2019
    #75
    MSEsperanza and MEMarge like this.
  16. Trish

    Trish Moderator Staff Member

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    No, you're right, it's me not making sense. Too much staring at numbers. I'll delete that bit. Though theoretically 0 on CFQ means scoring better than a healthy person on all aspects of fatigue, since 11 is the score for healthy levels of fatigue. That's some brainwashing!
     
    Trish, May 1, 2019
    #76
    daftasabrush, MSEsperanza, Cheshire and 6 others like this.
  17. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    What a great week we are having..... Brilliant news!
     
    Suffolkres, May 1, 2019
    #77
    Barry, John Mac, MEMarge and 4 others like this.
  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    @JohnTheJack: Do you know if the data on school attendance provided is that which allows to calculation of the trial's presepecified primary outcome (ie: that from school records, rather than just the participant's self-report)?

    I was expecting there to be two sets of school attendance data, but can only see one.

    Thanks for all your work on this.
     
    Esther12, May 1, 2019
    #78
    MSEsperanza, Sean, JohnTheJack and 3 others like this.
  19. Adrian

    Adrian Administrator Staff Member

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    Here are some graphs looking at how school attendance (self reported) changes between different time points


    SA_Diff_3_bl.png SA_diff_6_bl.png SA_Diff_12_6.png SA_Diff_12_bl.png
     
    Adrian, May 1, 2019
    #79
    MSEsperanza, Hutan, Sean and 4 others like this.
  20. Adrian

    Adrian Administrator Staff Member

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    Correlations between the different variables may be interesting. I've done some simple plots to show correlation on the non-economic data. Note I've failed to add a title so the first image is for LP and the second for SMC

    I'm not sure what to make of them but it looks like the SMC is what you would expect with correlations between the same measures over different time periods. Hads and anxiety scores seem to correlate between them but not as much else where.

    Note we expect strong negative correlation between CFQ and SF36-pf as one goes down and the other one goes up.

    With LP the baseline vars seem less well correlated with the other values which is interesting as it reflects the improvements in reported scores. Of course we don't know when anyone actually went to the LP course and this makes data hard to interpret.
    LPcorr.png SMCCorr.png
     
    Adrian, May 1, 2019
    #80
    Amw66, Sean, Daisymay and 2 others like this.
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