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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. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Location:
    Norway
    Trial by Error by David Tuller
    Deja Vu All Over Again with Proposed Lightning Process Study in Norway

    Quote
    The proposed LP trial led by LP investigator and Recovery Norway co-founder Landmark cannot be supported on scientific and ethical grounds, for multiple reasons. It is troubling that key players in Norway’s medical establishment believe otherwise. Hopefully, the NEM will once again draw the appropriate conclusions.
     
    MEMarge, Mithriel, EzzieD and 16 others like this.
  2. Andy

    Andy Committee Member

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    Hampshire, UK
  3. Midnattsol

    Midnattsol Moderator Staff Member

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    Looks correct. I don't know if it's a quirk of clinical trials, but I find it weird to say that the research council is a collaborator at the top, they are the funding body, not a collaborator. OK to have them in the sponsors and collaborator list, but not the pure collaborator one I think. Yest maybe nitpicking, but I've seen the argument "the research council has approved of the study!" one too many times. The council makes no judgement on the quality of the project, they are a first-come first-served funding body for the type of project this is.
     
    Hutan, alktipping, mango and 6 others like this.
  4. Trish

    Trish Moderator Staff Member

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    my bolding

    Do others find it as offensive as I do that the brief summary focuses more on what a burden we are to society rather than on the effect on individuals of having a life changing serious disease, along with being told we are a burden on society? I think this is especially awful in the context of a treatment that lays the blame squarely on the patient if the don't 'recover'.
     
    Hutan, Amw66, Kirsten and 17 others like this.
  5. Trish

    Trish Moderator Staff Member

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    Does this mean the trail has been given the go ahead?
    Note - unblinded trial with subjective primary outcome measure.
     
  6. dave30th

    dave30th Senior Member (Voting Rights)

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    2,182
    Not finally, no. That was set up months ago--I assume after it got the regional ethics approval but while the final approval was still pending. Perhaps they're allowed to recruit based on the initial approval until it gets rejected, if it does.
     
    alktipping, Wonko, MEMarge and 4 others like this.
  7. Midnattsol

    Midnattsol Moderator Staff Member

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    It's terrible, and the longer project description in Norwegian adds even more of this.
    No, the verdict from NEM on the study ethics have not been published yet.
     
    alktipping, Wonko, rainy and 6 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Merged thread

    A 3-day Course for Adults With Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME): a Randomized Controlled Trial : 2022 Norway


    Not a recommendation!

    the description of this trial as it appears on this website(medifind)

    Department of Psychology, NTNU
    Recruiting
    Trondheim

    Author: Leif Edward Ottesen Kennair
    Backup: Live Landmark

    https://www.medifind.com/articles/clinical-trial/334206297

    sourced from clinicaltrials.gov where we find what it is actually.......... ie the Lightning Process

    https://clinicaltrials.gov/ct2/show/NCT05236465
     
    Last edited by a moderator: Jan 10, 2023
    Peter Trewhitt and Hutan like this.
  9. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

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    Lightning Process is an Obedience Training.
     
    inox, Sean, alktipping and 7 others like this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    Excellent point. Treating adults like they are toddlers or pet dogs - that never really clicked with me before.
     
  11. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Oh no. Does this mean they got ethics approval!
     
  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Location:
    Norway
    no, it's not official yet what the National Committee for Medical and Health Research Ethics decided regarding the ethical approval. Hope we'll get some news soon.
     
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    12,299
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    Also: CBT & GET work, according to the people who think LP is great. Or "psychological-led rehabilitation", if they feel very generic. That's even how they know it's psychological, even though it's well-known that inferring cause from pragmatic trials is invalid.

    It's the quantum treatments that both work and don't work depending on how convenient it is to say either. There's both lots of evidence, hundreds of trials along with a "definitive" trial that is "the definitive one" but also just one among many, but so much more research is needed, so much that they just keep doing the exact same studies hundreds of times over, identical to one another, a completely generic formula.

    We've literally always been at war with East Asia and anyone who says otherwise is suffering from psychosis, or whatever. Also, and obviously it must be said, but there has never, ever, been a war in Ba-Sing-Se, only special, uh, conflict mobilization, or something.

    In addition to that, though, I don't understand how there aren't issues with pretending this is some generic "intervention", rather than a commercial product. They don't name it on purpose where it counts, it should be in the title and summary, explicitly named, since this is what's being tested, knowing it's unethical to do something like that, just not caring about it because by using different words, they genuinely seem to think it makes it all OK.

    So tobacco companies funding trials showing their product is safe and healthy and will make your skin glow? Just say they have "motivated sponsors" with the actual names in footnotes, I guess. Conflicts of interest are so easy to deal with, you simply have to avoid using any reference to the commercial interests and it's all good.
     
    Sean, alktipping and Peter Trewhitt like this.
  14. Midnattsol

    Midnattsol Moderator Staff Member

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    The verdict from the national ethic's board came today.

    Short version: The National ethic's board has given the study approval, and it will go ahead.
    The whole verdict can be read HERE (google translated)

    A minority on the board did not agree with the soundness of the project
    I am gutted this still went through.
     
    Last edited: Jul 13, 2022
    MEMarge, rainy, Hutan and 12 others like this.
  15. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I'm shocked
     
    MEMarge, rainy, Hutan and 10 others like this.
  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Location:
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    Nina E. Steinkopf: Kontroversiell ME-studie får etisk godkjenning
    google translation: Controversial ME study receives ethical approval

    quote:
    A long-planned study where 100 ME patients will be treated with the alternative method Lightning Process received ethical approval in 2020. Following complaints, the approval was withdrawn in 2021. After a minor adjustment in the study design, the project received new ethical approval. New complaints have not been taken into account.
     
    Hutan, alktipping, Lilas and 4 others like this.
  17. Midnattsol

    Midnattsol Moderator Staff Member

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    I noticed the google translated version said none on the board were incompetent, this is a translation error from the Norwegian "inhabil" which means none had conflict of interest.
     
    EzzieD, MEMarge, rainy and 9 others like this.
  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The verdict:

    Et 3-dagers kurs for kronisk utmattelsessyndrom/Myalgisk encefalopati (CFS/ME) hos voksne: en randomisert, kontrollert studie

    google translation:
    A 3-day course for chronic fatigue syndrome/Myalgic encephalopathy (CFS/ME) in adults: a randomised, controlled trial

    quote:
    Appeal against a decision from REK In the middle of 8 April 2022, where a previously rejected project received prior approval after certain adjustments. The decision was appealed by, among others, two interest groups that REK found to have the right to appeal.

    NEM does not accept the complaints, but supports the terms from REK Midt. NEM also sets additional conditions for pre-approval.
     
    Hutan, alktipping, Lilas and 5 others like this.
  19. Trish

    Trish Moderator Staff Member

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    That is so shocking and sad for the patients who will be subjected to LP. It's hard not to despair. My sympathies particularly to our friends in Norway.
     
    EzzieD, MEMarge, rainy and 17 others like this.
  20. NelliePledge

    NelliePledge Moderator Staff Member

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    Disgusting
     
    MEMarge, rainy, alktipping and 8 others like this.

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