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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. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    ladycatlover, Dolphin, Andy and 7 others like this.
  2. inox

    inox Senior Member (Voting Rights)

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    :rofl:
     
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Daaamn, there are some good face slaps in there. This in combination with the Mathees case really makes them an unreliable bunch in future legal proceedings. Justifiably so, but it's good to see it written down.

    Fun fact: it's not a good idea to attempt to mislead a tribunal by making bad faith arguments.

    [​IMG]
     
    Last edited: Mar 12, 2019
    ladycatlover, Inara, Andy and 9 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Interesting. Crawley claimed to have been motivated to do the trial because soooo many parents had asked her about it. Totally real, organic and unexpected demand. And then she was tooootally surprised by the positive results. Genuine surprise. Such real, much sincerity.

    I guess cherry-picking can become a habit. There definitely is strong demand for something if you just ignore everyone who does not demand it and especially if you ignore those who reject it entirely.
     
  5. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Wonderful news, it made me SMILE.

    Thanks for your excellent work @JohnTheJack !
     
    sea, ladycatlover, Dolphin and 12 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I think more of concern is when she went on to say
    “If the Lightning Process is dangerous, as they say, we need to find out."
    so they hand the kids over to therapists with unrecognised qualifications, performing an unknown therapy without supervision.
    How that passed the ethics committee by is unbelievable.
     
    Chezboo, Daisy, sea and 32 others like this.
  7. JohnTheJack

    JohnTheJack Moderator Staff Member

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    This can only be appealed on a point of law.
     
    sea, ladycatlover, mango and 22 others like this.
  8. JohnTheJack

    JohnTheJack Moderator Staff Member

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    It's the legal test: can a resourceful, motivated person identify someone from the data released.
     
    ladycatlover, Andy, inox and 8 others like this.
  9. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thank you everyone for the kind words. I won't clutter up the thread with replying to each one, but they are appreciated.
     
  10. dave30th

    dave30th Senior Member (Voting Rights)

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    Since she swapped primary and secondary outcomes midway through, it is hard to see how she could have been surprised by the results.
     
  11. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I forget where I read it, but didn't Crawley also say of a Lightening Process practioner involved in the study that she (Crawley) had worked with her (the practioner) over a number of years. Doesn't this potentionally contradict her (Crawley's) claims that she had no expectations in relation to the Lightening Process.
     
  12. JaneL

    JaneL Senior Member (Voting Rights)

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    Wow this is a really big deal! Thanks so much for persevering with this @JohnTheJack. Brilliant stuff :thumbup:
     
    ladycatlover, Atle, Dolphin and 8 others like this.
  13. Barry

    Barry Senior Member (Voting Rights)

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    Poor dears, they know no other way.
     
    ladycatlover, Andy, andypants and 4 others like this.
  14. Barry

    Barry Senior Member (Voting Rights)

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    How much of the data are you getting @JohnTheJack? Is it enough for a good thorough reanalysis?
     
    ladycatlover, Andy, andypants and 4 others like this.
  15. Gday!

    Gday! Established Member

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    As a parent of a child thank you sincerely, anything that Ester Crawley was involved in needs to scrutinised , so many children are harmed daily, have no quality of life and are abused and dismissed because of her awful trials. This has made my day.
     
    ladycatlover, Atle, Inara and 18 others like this.
  16. JohnTheJack

    JohnTheJack Moderator Staff Member

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    It should be enough:

    Please provide the following patient-level data at baseline, 3 months, 6 months and 1 year assessments, where available
    1. SF-36 physical functioning scores.
    2. School attendance in the previous week, collected as a percentage (10, 20, 40, 60, 80 and 100%).
    3. Chalder Fatigue Scale Scores.
    4. Pain visual analogue scale scores.
    5. HADS scores
    6. SCAS scores
    7. Work Productivity and Activity Impairment Questionnaire: General Health
    8. Health Resource Use Questionnaire.
     
    Sid, MSEsperanza, sea and 20 others like this.
  17. rvallee

    rvallee Senior Member (Voting Rights)

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    Wasn't it Parker himself? I vaguely remember something like that as well but it's fuzzy.
     
  18. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Crawley may have had links with Parker but I have no recollection of having read about this.

    My memory was of Crawley talking about a practioner involved in the SMILE trial. She was justifying her confidence in subjecting the children to the Lightening Process because she knew professionally this practioner and had worked with her over several years. It sounds as if it would have been in a talk or a newspaper interview rather than the paper itself. However it struck me as inconsistent with her claims to have no prior expectations about the outcome of the study.
     
  19. Milo

    Milo Senior Member (Voting Rights)

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    Congratulations @JohnTheJack this is quite the victory.
    I cannot help myself but think about those who are on the other side of this decision likely angry and terrified about having to give out their data. May science prevail.
     
  20. TiredSam

    TiredSam Committee Member

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