Trial By Error: Norway’s Proposed Lightning Process Trial

By David Tuller, DrPH

Last year, Archives of Disease in Childhood slapped a 3000-word correction on a University of Bristol study of the Lightning Process. The lead investigator was Bristol’s ethically and methodologically challenged pediatrician, Professor Esther Crawley, who failed to disclose to the journal that the study had violated core scientific principles.

As I have previously stated, the study appears to meet both UK and US standards for research misconduct. It is indisputable that the journal would not have accepted the study had Professor Crawley and her team of experienced researchers been honest about the fact that they retrospectively registered more than half the participants and swapped outcomes midway through. The journal’s decision to let the findings stand despite these anomalies was a disgrace–as indicated in the astonishment expressed by more than 70 experts in a letter I organized last fall and sent to Dr Fiona Godlee, editorial director of BMJ.

Nonetheless, according to recent news reports, Norwegian researchers are plowing ahead with a Lightning Process study of their own. A request for funding for a similar study was turned down by federal last year. Now Live Landmark, a long-time LP practitioner and proponent, has revived the proposal as a research project affiliated with her current enrollment in a graduate program in psychology. Although this iteration appears to have received financial support, it has not obtained ethical approval, according to Nina Steinkopf, a blogger and activist who has been tracking the situation.

Here’s a link to what Steinkopf wrote on Thursday. The post below is from Google Translate. I will take a look at the study design in a subsequent post.

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Contested LP study is not approved yet
April 30, 2020 · at melivet

For two days in a row, NRK P2 / Ekko has had information about the controversial, planned study in which ME sufferers will be treated with the alternative method Lightning Process:

“Now, large sums will be invested in researching a treatment for ME sufferers”.

I have been in contact with Regional Committees for Medical and Health Research Ethics (REK) at NTNU in Trondheim today and asked if the project is approved. They respond that:

“We have not received any application for this study yet. It looks like the study is in the planning phase and has not started. The study must be approved by us before start-up so I expect there will be an application for us in the near future. ”

The REK’s website states that the next scheduled meetings are May 5, June 9, August 18, September 22, November 3 and December 8. The treatment time is approx. three weeks after the committee has considered the application.

Adverse effects

The radio broadcast stated that the strict Canadian criteria should be used in selecting study participants. Prof. Vegard B. B. Wyller, who is a project co-worker in the study, said that the study must have the same strict research method requirements as in drug research.

General Secretary Olav Osland of the Norwegian ME Association was also interviewed. He expressed concern that public institutions are investigating alternative treatment that has been shown to harm patients. To that Wyller replied that:

– In the studies we know of similar techniques, no harmful effects have been detected at all. The research project is there to map this out – well, right ?! The benefits we think are far greater than the disadvantages – we think it is ethically justifiable to do so.

Wyller has long recommended that ME-sick children be treated with LP. Read more in NRK: 13-year-old attempted suicide after ME course

The Research Council granted up to NOK 1,767,000 for the project on April 3. The project manager is Professor of Psychology, Leif Edward Ottesen Kennair. 20 municipalities in Viken are invited to participate. Currently, it is known that 2 municipalities have accepted yes; Lørenskog and Aurskog-Høland.

The project description states, among other things. that “there seems to be a ‘social contagion’ of the diagnosis and incidence may be higher in a small part of the municipality than in the municipality as a whole. This may indicate that there are more factors than the purely medical ones at play. ”

Read more about 17 patient experiences here: Lightning Process is harmful to ME patients

 

Comments on this entry are closed.

  • Alicia Butcher Ehrhardt, PhD 2 May 2020, 10:50 pm

    When a patient has a physical illness, and is told it needs to be fixed by a mental process such as the Lightning Process (which sound sham even in that context – I believe patients aren’t supposed to talk about it?), we would call that medical gaslighting.

  • SC 3 May 2020, 2:43 am

    According to the largest broadcaster in Norway a 13-year old also tried to commit suicide shortly after having participated in this course. You can read about it here, but it’s in Norwegian:

    https://www.nrk.no/livsstil/forsokte-selvmord-etter-me-kurs-1.7891470

    According to the article, he was given the advice to take the course by none other than Vegard Bruun Wyller, the same professor who now claims not to have heard about any adverse effects from the course. That is quite troubling to say the least.

  • Trisha 3 May 2020, 3:21 am

    Surely this is just their Govts way of dealing with post covid cases?

    By assuming this is psychogenic –
    Designing a study cohort to deliver the results they want – So they can do whatever they want with this patient popullation who they are assuming will become burdens to society under the assumption thats just what becomes of us.

    No no .. These treatments stand in the way of Actual recovery- causing severe, progressive disability instead of accepting we are dealing with post viral neuroimmunological complications.

    The fact they can even go on record and say – these treatments cause no harm – shows just how dismissive and irresponsible they are.

    The fact they aren’t taking into account any of the research thats come forward regarding the effects of LP – especially now ME/CFS has been proven to be an organic illness .. Just Screams Harm.

    How can Sweden be so forward thinking with regard to upright functional imaging diagnostics proving cranioceevical instability and brainstem compression in over 90% of ME/CFS & Fibro cases – just a few months ago … and Norway just be floating in the dark ages ??

    Its baffling. The psychosocial brigade behind this needs to be Known.

  • Joan Crawford 3 May 2020, 9:21 am

    In my clinical practice I have encountered patients who have undertaken the LP. One continued to push himself to the point where he developed internal bleeding and very nearly lost his life. Another has a flare up of a pre existing gastric problem which also caused internal bleeding. Both patients were fortunate to have been around medically trained people when this happened.
    PWME being encouraged to ignore symptoms, deny symptoms to themselves and others is shocking to watch and hear. Gaslighting.

  • Richard Vallee 3 May 2020, 11:18 am

    “appears to have received financial support, it has not obtained ethical approval”

    Sums this up pretty well. It is ethically indefensible, morally bankrupt even, serves no legitimate purpose, yet already has funding.

    The authorities responsible for this nonsense, just the same for those who approved of SMILE, have beclowned themselves. What’s next? Divination? Remote alchemy? Synchronized astrology? Wait, no, those aren’t commercial products. Tiger-repelling rock therapy then? Now that’s good business.

    This is exactly how trust in expertise is destroyed. With quacks in charge, what even is expertise? Why even trust what any expert says when even so-called “experts” can’t tell the difference between the most blatant pseudoscience and actual science? Thanks for ruining it for everyone.

  • Lucie Webb 4 May 2020, 6:19 am

    Until doctors, especially mind doctors, start talking to TMJ dentists, like David Williams of Okotoks, Alberta, they will never understand that all the body’s soft tissues hang from its hard tissues. Sure, your (dis)ease may result from an event that happened to you in childhood but it is more likely that the event occurred when a dentist removed a tooth/teeth, thereby skewering your body for ever after. A lot of us are wandering around unable to take in sufficient oxygen or attain level 4 sleep as a result. If you want to have a laugh in these dark times I recommend Flann O’Brien’s the Truth About Teeth from his book, At War.