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. Midnattsol

    Midnattsol Moderator Staff Member

    Messages:
    3,778
    "Should not take place in its current form". It's still a win and I'll take it :laugh:

    Their biggest issue seems to be that Landmark would choose the participants and that this would be done without using objective criteria (so that it cannot be generelizable to others pwME), I wonder how they will try to get around that. Also NEM wants more objective primary outcomes, and they nailed the "teaching participants to answer better on questionnaires" issue.
     
    cfsandmore, Wonko, Missense and 23 others like this.
  2. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    4,002
    Location:
    Belgium
    This is disappointing:
    But this is more interesting:
     
    Robert 1973, Wonko, Milo and 24 others like this.
  3. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    That is brilliant news. So great to hear of a project being stopped on all the grounds we have been going on about with the BPS CBT/GET studies.
    Perhaps this should be highlighted to NICE and Cochrane to feed into their consideration of research under review. Every little helps.
    @Hilda Bastian, @Medfeb, @Keela Too, @adambeyoncelowe. More ammunition for rejecting studies with the same flaws.
     
  4. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,424
    This could be a serious obstacle to any further LP studies. It's at the core of what is LP is and how it's supposed to work which seems to imply that LP studies are inevitably fatally flawed. Unless they use objective outcomes but I think Landmark is clever enough to avoid them. They're likely to show no benefit and this would risk showing that LP is ineffective which is contrary to her goals.

    Modifying LP to avoid the "telling others you're recovered/improved" issue risks weakening the effect (probably quite substantially). Even if a hypothetical study obtains a positive effect with a modified LP, it could fail to give credibility to the unmodified LP. The "telling others you're recovered/improved" component of the unmodified LP is also important in promoting LP via testimonials so it is not desirable to actually use the modified LP even if achieved a positive study result.

    She might just decide that it's not worth pursuing this further.
     
    Last edited: Jun 4, 2021
    cfsandmore, Wonko, Missense and 21 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    13,659
    Location:
    Canada
    Surprising good news. In hindsight maximizing bias and conflicts of interest was very foolish, but this is the only way they could manufacture their evidence.
     
    Wonko, Kitty, Legend and 18 others like this.
  6. Marky

    Marky Senior Member (Voting Rights)

    Messages:
    590
    Location:
    Norway
    Im so fucking ecstatic Jonathan.

    I was one of the ones who sent appeals with the methodological concerns, and to see The Research Ethics Committees explicitly acknowledge what we wrote and agree has given me som belief in the system again. This was a HUGE decision for us. That study would have been a disaster, everyone could see it except REK-midt and the researchers. Lets go!
     
  7. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,837
    Location:
    UK West Midlands
    Well done :thumbup:
     
    cfsandmore, Wonko, Missense and 15 others like this.
  8. Marky

    Marky Senior Member (Voting Rights)

    Messages:
    590
    Location:
    Norway
    Also, after i got ridiculed by the researchers, media and on social media after instigating a signature campaing pointing out the methodological flaws, this feels so much sweeter!! Whos laughing now baby!
     
  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    The initial assessment is a fundamental part of the LP. Allegedly, it assesses if you are "ready" or "suitable" for treatment. As far as I know every LP participant has to undergo this first.

    It makes a nonsense of objective research because it is an ideal opportunity to cherry pick people who are most likely to be compliant during the course and tell the course leader what they want to hear.
     
    cfsandmore, Wonko, Mithriel and 21 others like this.
  10. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,424
    Everything about LP is designed to maximize bias and placebo effects.

    This ruling is very satisfying and encouraging. Hopefully it signals better days to come.
     
    cfsandmore, Wonko, Missense and 24 others like this.
  11. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    4,081
    When Esther Crawley published her Lightening Process study in 2018 I thought great, the whole methodology of open label trails with subjective outcomes in ME will be seen for what it is, this study being the ‘reductio ad absurdum’ of this approach when it purportedly endorses such a patently nonsensical intervention. Unfortunately the reverse seemed to happen and apparently serious scientist had taken the author’s and the LP’s claims on face value.

    So it is great news that Lightening Process empire building in Norway has received this set back, which hopefully is reported world wide. Well done to all who fought it.
     
    Wonko, Mithriel, Legend and 24 others like this.
  12. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,424
    The committee's view that wait list controls are adequate is odd. It's easy to find critiques of the wait list control groups in psychotherapy research. It has even been argued that they could be a nocebo.

    This raises an interesting question about what control group would be ideal. Given the reports of deterioration following contact with the healthcare system as well as widespread dissatisfaction, care-as-usual for ME may also be a nocebo.

    Things are so much easier with a placebo control group.
     
    Wonko, Kitty, Legend and 11 others like this.
  13. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,570
    Location:
    Norway
    I agree it's easy to criticise, but waiting list controls is acceptable in psychological research, as far as I understand..
     
    Last edited: Jun 4, 2021
    Kitty, Louie41, Sean and 3 others like this.
  14. benji

    benji Senior Member (Voting Rights)

    Messages:
    167
    This come right after Live Landmark, the Ph D candidat and ovner of LP in Norway tweets this
    https://twitter.com/user/status/1400745469073055744

    and this (I deleted this as it came with tweet from a third person)
    (I hope it is easy to translate from Norwegian in Twitter, it uses to be that.)

    Quite convenient that those attitudes got negatively rewarded today!
     
    Milo, Kitty, Legend and 7 others like this.
  15. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    Presumably they can alter this and resubmit... but still, that was part of the problem with the study, and I'm surprised by an ethics committee taking a serious concern about a study like this seriously. As a sign things aren't as bad as I expected, that's got to be good.

    It's a bit grim that things are so bad that I can be unsure whether making improvements is useful or not: maybe it's better to have things being as transparently terrible as possible?
     
    Kitty, Louie41, Woolie and 7 others like this.
  16. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    4,002
    Location:
    Belgium
    It may be used by some but I think there is no good justification for this. It is not hard to see why a waiting list control is highly problematic. A child could understand it.

    So if the field finds this acceptable, then psychological research would simply be unacceptable.

    I really think things are getting better and I would take any improvement no matter how small.

    That said, a couple of years ago I thought Norway was a leading example in ME/CFS research, so it has been sad to watch this whole episode about the Lightning Process and CBT + Music therapy, Larun accusing activist patients of attacking her review, and now the study by Gotaas.
     
    Robert 1973, Mithriel, Kitty and 19 others like this.
  17. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,420
    NEM's clear recognition of this must surely have implications beyond the LP, because ME/CFS trials for CBT and GET have been plagued with the same sort of bias.
     
    cfsandmore, Wonko, Mithriel and 22 others like this.
  18. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    I really hope so.

    It also tells us that they wouldn't have found La Crawley's LP study acceptable.

    I wonder what she and the powers that be at Bristol make of that?
     
    Wonko, Kitty, Legend and 15 others like this.
  19. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,837
    Location:
    UK West Midlands
    Maybe @dave30th will drop them a line for their thoughts
     
    Kitty, Legend, Louie41 and 8 others like this.
  20. Sean

    Sean Moderator Staff Member

    Messages:
    8,064
    Location:
    Australia
    Anti-science par excellence.
     
    Kitty, Legend, Louie41 and 8 others like this.

Share This Page