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Lightning Process study underway in Norway

Discussion in 'PsychoSocial ME/CFS Research' started by Kalliope, Apr 28, 2020.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    From today's morning news on NRK P2-radio

    A new Norwegian study will investigate the treatment Lightning Process; a method in stress treatment and mental techniques.
    The study will be led by psychology professor Leif Edward Ottesen Kennair from the Norwegian University of Science and Technology.

    He says that he thinks more research will help the conflict and that important questions in the society must be settled by research.

    The study will be done in cooperation with the Norwegian Institute of Public Health and with support from the Directorate of Health and the National Competence Service for CFS/ME.

    20 municipalities in Viken are invited to participate. The patients enrolled will be diagnosed by the Canadian criteria. The LP-seminar will be led by research fellow Live Landmark.

    The general secretary of the Norwegian ME Association is sceptical and worried that a public institution wants to investigate an alternative treatment that has been harmful for patients.

    Professor Wyller will be research associate and says that according to the studies on similar techniques no harm has been proven, and that they believe the benefits are much larger than the disadvantages.
     
    Simone, Anna H, Ravn and 18 others like this.
  2. chrisb

    chrisb Senior Member (Voting Rights)

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    Do they make clear what specific measures in the research will seek to overcome this apparent bias?
     
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  3. lycaena

    lycaena Senior Member (Voting Rights)

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    What a waste of money. :banghead: :grumpy:
    I hope they will at least use objective endpoints.
     
    Last edited: Apr 28, 2020
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  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    No objective endpoints ? Beggars belief
     
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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Nina E. Steinkopf wrote about this study in February 2020

    google translation Health authorities support research on controversial alternative treatment

    The study facilitates bias. It includes only those who want to take LP and is motivated for it, and therefore it can say nothing about the effect on everyone who has ME.

    Those who want to take LP should then be divided into two groups, with one group on the waiting list and the other taking LP. Those on the waiting list are the control group - and should also take the LP. Then you can get a placebo effect in the group that gets treatment (which is the whole point of LP) but also the nocebo effect in the group that is waiting - because they will think that they are waiting for something that they think has an effect .

    This is a design designed to prove a hypothesis and not to test it. A good design would be to expose the hypothesis to real testing. If it still holds up, you might be on to something. At least there should have been objective measures of outcomes, eg an activity meter.
     
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  6. Trish

    Trish Moderator Staff Member

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    I hope they will be doing blood testing on before and after samples with banking of blood for when a diagnostic test is developed. And 2 day CPET before and after, and actimeters worn throughout and long term follow up. But of course they won't.
     
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  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Well, maybe they'll use an actimeter. If it shows a reduction in activity, they can just blame it on that the intervention wasn't combined with graded exercise, as Wyller did in his CBT/Music Therapy study..
     
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  8. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Surely the same (flawed) argument could be made about many alt-health "treatments" such as homeopathy? Why does he claim that "Lightning Process" is any different?
     
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I doubt they even care to learn about the finer details of LP. Wyller believes ME is a form of Pavlovian conditioning. So I guess what's needed is something that can snap us out of it. Could be anything, really? The method itself and its qualities is probably completely secondary for him.
     
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  10. strategist

    strategist Senior Member (Voting Rights)

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    Is anything known about the study design?

    If the study is competently designed it could indeed settle the controversy.

    Unfortunately I suspect that competent researchers would not take LP seriously in the first place or decide to spend time and resources on testing whether you can wish yourself well in 3 days. :D
     
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  11. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I doubt it. Nina Steinkopf writes a bit about the design in her blogpost. I'm trying to find a publicly available document about the planned protocol, but can't find anything for now.

    From what has been described earlier about the project it's supposed to have one group who gets the intervention and a control group who also gets the intervention, but a few weeks later. However, I don't know if that is what they'll actually end up doing.
     
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  12. Hutan

    Hutan Moderator Staff Member

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    Is there any way the Norwegian ME Association could get involved, to make the trial design decent? e.g. long enough to pick up the post-honeymoon stage, with activity trackers worn long term... Surely with all that government involvement there would have to be some show of listening to the main patient organisation?
     
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  13. lycaena

    lycaena Senior Member (Voting Rights)

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    Last edited: Apr 28, 2020
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  14. lycaena

    lycaena Senior Member (Voting Rights)

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    This would make a long term follow up impossible.
     
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  15. strategist

    strategist Senior Member (Voting Rights)

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    Presumbly they will compare the first group to second group, after the first has received LP and while the second is still untreated.

    In this case, it would effectively be an uncontrolled study.
     
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  16. Marky

    Marky Senior Member (Voting Rights)

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    This is going to be a train wreck of a study

    Its impossible to do research on LP due to the very fact that the method itself demands of the participant that they ignore symptoms, hence they cant trustfully report their actual function.

    And subjective outcomes is already a huge problem in ME-research due to all the possible bias

    Add this to the fact that by design comparable long term follow up here is impossible, and we will surely get some false conclusion that LP works. Im willing to bet on it.

    Also, this group always ends up researching on chronically fatigued patients, not ME, but now claims they will use canada criteria. I dont believe it before I see it

    Keep your eye out on this @dave30th
     
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  17. strategist

    strategist Senior Member (Voting Rights)

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    Ignoring the usual issues with lack of blinding and subjective outcomes, the absence of a no-treatment group at an eventual long term follow up would mean it becomes impossible to tell whether LP is any better than doing nothing in the long term.
     
  18. Peter

    Peter Senior Member (Voting Rights)

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    Shit. That is a whole lot of shady people coming together. Trust is not the first word that springs to mind.

    My greatest concern here is this: you select a bunch of the so-called “sickest”patients, those who by accident/chance or the very rare advice of actually taking care and pace themself very carefully for a while, then implement LP when improvement is under way. And abracadabra! It was LP that got them better. Hmmm..? Not. Maybe needless to say, but the results may be skewed in all possible ways. Selection of patients will be absolutely critical.

    The obvious problem in some of these people’s storytelling, is that most patients don’t experience what’s described above. Most patients actually don’t get any good advice, they simply continue as best as possible by great mental efforts, twisting every neuron to go by, but finally they stop, they deteriorate with great consequences. And they still wonder how and why patients get harmed by LP? Astonishing. But the narrative and impression they so wrongfully sell, is that ME-patients passively just surrender to the wrong advice or idea, either given by a professional or by wrongful thoughts, that the only thing working is lying in the dark for ages.

    At first, I really don’t think it is the case that health professionals advice patients to lie down to improve your health. It is quite the opposite way, and in many ME-cases also very harmful. And even if it was so, that someone told a patient to just give up, so to speak, very few patients would just surrender and give up. These people have no idea of human nature.

    But hey, what else is new? These people have got it completely wrong when implying that surrender /wrongful thoughts are ME-patients problem on a group level..? It is simply horrific. So wrong it is hard to describe, but personal prestige triumphs patients wellbeing.

    There are plenty of things to be aware of here, also important to point out that the narrative of how ME-patients actually move along from debut of disease to some sort of continuous passive state, in general and on a group level are completely wrong.
     
    Last edited: Apr 28, 2020
  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I don't know any details here, but will imagine the Norwegian ME Association wouldn't get anywhere near this study. And there is a better alternative for the researchers in the "patient organisation" Recovery Norge which Wyller has already used as patient representatives for his CBT/Music therapy study.
     
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  20. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I would like to see (but don't expect) the study provide a detailed and precise accounting of what LP is supposed to achieve by way of recovery. Are the participants supposed to be able to return to their previous healthy levels of functioning immediately after the course? And is that level to be sustained permanently? Or does recovery mean something else or need regular infusions of repeat therapy sessions?

    These are some of the questions I have.
     
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