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Lightning Process study in Norway - Given Ethics Approval February 2022

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Kalliope, Apr 28, 2020.

  1. inox

    inox Senior Member (Voting Rights)

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    Norway
    Why this PR-campaign, for a study without ethical approvement?

    So the regional ethics commitee(REK) has not even gotten an application yet. Actually glad to hear that.

    It would be quit a downfall, if this suggested LP-study, as other proposals before it, didn’t get approved.

    I’m not sure how many tries there have been from Landmark, Wyller and co. But REK have seen through bad study design before, and denied approval.

    So why this PR-campaign, even before entering an application?

    Trying to bias, or put pressure on REK....?
     
  2. Midnattsol

    Midnattsol Moderator Staff Member

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    3,574
    But even if REK looks at the method, they are primarily an organ that looks at the ethics. And if the method can harm participants or not. Yes there's something in there about the research being valid for the future, but different methods have different goals and not everyone is concerned about future. A "stepped wedge" design is a vald method even if it doesn't suit those of us that want long-term data on a control group.

    I'm not sure if I get this campaign, and even if I did is REK really the place to send it first? If scientific misconduct is believed to be happening, the first place to go is the institution in question, no? And then REK. We don't even know if they will apply to REK before starting, they could even be hoping to get it approved after they begun (which is risky, but still). And I'm sure someone somewhere will argue that REK is not necessary. :wtf:

    It wouldn't be the first time with an LP study. :banghead:
     
    Last edited: May 8, 2020
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    I'm sure SMILE had ethics approval.

    I agree that there's good reason to think carefully about what message is appropriate for whoever is being petitioned, and that care is taken to understand the way the researchers in the room will be able to respond to it.
     
    Peter Trewhitt, Legend and Kalliope like this.
  4. Midnattsol

    Midnattsol Moderator Staff Member

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    What I meant by that is they didn't apply to an ethical commitee specifically for SMILE. There was something about previously aquired approval for some other thing I don't remember.

    From Virology blog:
    Remarkably, Professor Crawley and her co-investigators decided that this school absence study was exempt from such a review. The paper included the creative claim that the study did not need one because it qualified as what was called “service evaluation.” In publishing the paper, BMJ Open implicitly endorsed that questionable argument.
    https://www.virology.ws/2018/01/02/trial-by-error-the-school-absence-study-revisited/
     
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    That was a different piece of Crawley research, not SMILE.
     
  6. Trish

    Trish Moderator Staff Member

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    51,871
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    There are so many ethical and methodological violations that it's hard to keep track of. Is it the one that was super shady or the other one that was extra unethical?

    But sure, let that person hold statutory authority over vulnerable children in a very controlled setting that has long been devoid of accountability and filled with bizarre exemptions from normal rules.
     
  8. dave30th

    dave30th Senior Member (Voting Rights)

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    2,182
    I'm sure a spreadsheet of Professor Crawley's papers and associated methodological/ethical violations, and whether they have yet been corrected officially, would be useful to future generations of researchers.
     
    Hutan, 2kidswithME, Legend and 14 others like this.
  9. Midnattsol

    Midnattsol Moderator Staff Member

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    Thanks for correcting me, I'll just quote rvallee :)
     
  10. Trish

    Trish Moderator Staff Member

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    I agree. Giving ethical approval for a study like this on children (or adults) suggests a failing in the ethics committee. It does not mean that the study is ethical.
     
    Anna H, Ravn, MEMarge and 8 others like this.
  11. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Norway
    Article about the study in the newspaper Dagsavisen Fremtiden.

    Assistent general secretary in the Norwegian ME Association Trude Schei says: If it really was that simple, that a small seminar could change everything - that you can think yourself well, then ME wouldn't have existed.

    Previous general secretary in the Norwegian ME Association Anette Gilje tells about a survey they did where half of the responders who had tried LP, reported of deterioration afterwards. She says: I can't fathom that research on a quack treatment as this, on severely sick people, receives financial public report.

    LP coach Live Landmark didn't wish to comment, as she in this connection is a doctoral research fellow.
    Professor in psychology Leif Edward Ottesen Kennair will be the supervisor of this research project and promise to do everything he can for the treatment effect to be assessed in an independent, fair and scientific way. He has no qualms regarding Landmark being both a research fellow and LP coach.

    Prof. Per Magnus from the Norwegian Directorate of Public Health will also be advisor in the project and says in an email that in this connection Landmark is a researcher and that she runs a risk if the project won't show any effect.

    Dagsavisen Fremtiden: - Hvis det hadde vært så enkelt at du kan tenke deg frisk, så ville ikke ME eksistert
    google translation: If it was as simple that you could think yourself to recovery, then ME wouldn't have existed
     
  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The study will be tremendously independent, fair and scientific. Bigly! It will be the greatest study you've ever seen! :rolleyes:
     
    Last edited: May 14, 2020
  13. Wonko

    Wonko Senior Member (Voting Rights)

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    I have never had much success with shouting at things.

    Glaring at things, whilst finger tapping, is however a tried, tested, and often successful method of achieving the desired results.

    It works with virtually all electronics, as well as washing machines.

    It does not work on fridges. (ETA - or cats)

    It sometimes needs the additional treatment approach of picking the item up and dropping it an inch or so.

    But shouting - that doesn't really work on anything.
     
    Last edited: May 13, 2020
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    OH! YES IT DOES!
     
  15. Sean

    Sean Moderator Staff Member

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    Sometimes it does.
     
  16. Marky

    Marky Senior Member (Voting Rights)

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    My life is complete

    I have finally seen Jonathan go absolutely livid in full CAPS LOCK :woot:
     
    TiredSam, 2kidswithME, rainy and 9 others like this.
  17. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Exactly. Trying to resist the illness, ignoring it, and doubting it is normal and everyone does it at some point. If that was all it took to get better most people would recover on their own in little time.

    The BPS people, thinking themselves smart and patients very unintelligent, say "have you tried to just not let symptoms interfere with your life?" Then they are thrilled with their trivial suggestion, fully expecting it to do miracles.
     
    Last edited: May 13, 2020
    Hutan, inox, TiredSam and 20 others like this.
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    OH NO I DIDN'T
     
  19. rvallee

    rvallee Senior Member (Voting Rights)

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    That would actually be the first. Of hundreds. There are decades of precedent showing these people are completely incapable of that, that every time they face outcomes they don't like they simply lie and cheat, and that's when they don't bias things so heavily that it's basically a formality.

    I would say don't insult our intelligence but that's basically the starting point of pretending this infantile pseudoscience garbage is serious so whatever.
     
    TiredSam, MEMarge, EzzieD and 9 others like this.
  20. Sean

    Sean Moderator Staff Member

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    promise to do everything he can for the treatment effect to be assessed in an independent, fair and scientific way

    So, he will be insisting on full transparency and objective outcome measures?
     
    Hutan, TiredSam, andypants and 6 others like this.

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