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Trial By Error: Top Lightning Process Proponent Privately Lobbied for Approval of Norway’s LP Study

7 December 2022 by David Tuller

By David Tuller, DrPH

*Two corrections had been made in the text below. The NEM committee has 12 members, not nine, as I originally wrote. And when Dr Flottorp wrote her letter, it was not while the NEM committee was considering the proposed Lightning Process trial, as I originally wrote, but before it had progressed that far. The letter was written in expectation that the matter could be forwarded to the NEM committee, which it then was.

Dr Signe Flottorp is a promoter of the Lightning Process for ME/CFS as well as the research director at the Norwegian Institute of Public Health. That’s a scary combination! Dr Flottorp, a general practitioner, is also a fervent member of the Scandinavian arm of the CBT/GET ideological brigades. She and two colleagues recently wrote an ill-informed opinion piece promoting GET and CBT called “Facts and myths about ME” for Aftenposten, a major news organization. Aftenposten also published my rebuttal–with an appealing photo!–in which I declared their unfounded arguments to be “tullprat.” (“Nonsense,” for non-Norwegians.)

[Read more…] about Trial By Error: Top Lightning Process Proponent Privately Lobbied for Approval of Norway’s LP Study

Filed Under: David Tuller, ME/CFS Tagged With: flottorp, Lightning Process, norway, Steinkopf

Trial By Error: Norwegian CBT/GET Ideologues Take Aim at Critics Who Reject Their Views

1 November 2022 by David Tuller

By David Tuller, DrPH

[*See correction in third paragraph]

Three Norwegian researchers recently published an attack on critics of cognitive behavior therapy and graded exercise therapy as treatments for ME. The article, called “Facts and Myths about ME,” was published by the news organization Aftenposten. The authors, from the Scandinavian arm of the CBT/GET ideological brigades, asserted that “the cause of ME is most likely a combination of biological, psychological and social factors”—but they provided no convincing evidence for this causal claim. (I don’t read Norwegian, so I am relying on Google translate here. I apologize if the translation does not accurately convey the authors’ meaning.)

They also asserted the following: “Cognitive behavioral therapy and graded activity adjustment [an alternative term for GET] can make many ME patients healthier…This claim is thoroughly documented. It is fraudulent to claim that there is scientific evidence that such treatments make patients sicker.”

[Read more…] about Trial By Error: Norwegian CBT/GET Ideologues Take Aim at Critics Who Reject Their Views

Filed Under: David Tuller, ME/CFS Tagged With: norway, Steinkopf, wyller

Trial By Error: Deja Vu All Over Again with Proposed Lightning Process Study in Norway

31 May 2022 by David Tuller

By David Tuller, DrPH

It’s déjà vu all over again in Norway with the Lightning Process (LP). Earlier this month, a national research ethics authority, NEM, postponed a decision on a proposed LP trial until at least June. The trial has already been approved by a regional committee. The NEM had been expected to decide at its May meeting but did not.

This is the second go-round for this saga. Last year, a previous and also inadequate trial proposal was approved at the regional level but rejected by NEM—and after a similar delay from the expected decision date till a subsequent meeting. At that point, NEM determined that the proposed trial was fraught with conflicts of interest and potential bias. However, this year’s designated committee has new members who might assess the project differently, despite its ongoing deficiencies.

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Filed Under: David Tuller, ME/CFS, Uncategorized Tagged With: Lightning Process, Live Landmark, norway, phil parker

Trial By Error: My Letter Responding to Norway Health Leader’s Efforts to Denigrate My “Activist” Work

18 February 2022 by David Tuller

By David Tuller, DrPH

Updated on March 2, 2022:

Yesterday I received a thoughtful note from Professor Miek Jong in response to my recent letter to her (see below) regarding the effort on the part of a leading Norwegian doctor to denigrate my work by describing me as an “activist.”

I have sent Professor Jong the following answer:

Dear Miek–

Thanks so much for your gracious response. It’s great that you’ve had experience at Berkeley and UCSF! 

I don’t mind my work being mentioned in this debate. What I find disturbing is that Dr Flottorp and her colleagues apparently deride anyone opposing their views as an “activist,” notwithstanding any professional and academic credentials or the merits of the issues raised. Moreover, they do so as if the word “activist” automatically disqualifies someone from having a legitimate perspective. 

When an intervention essentially tells patients that to acknowledge having an illness or symptoms or even negative thoughts represents a failure, it is self-evident that their responses to subjective questions about how they feel are likely to be infused with an unknown amount of bias. This should not be a controversial or confusing concept for experienced investigators to grasp, but apparently it is.

Good luck holding down the fort in this debate! 

Best–David

David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley

In my previous post about a whine de coeur from northern European members of the GET/CBT idealogical brigades, I mentioned that the lead author, Signe Flottorp, had cited my work in a 2020 letter. In that blunt message, she characterized me as a “well-known ME-activist.” The letter is part of an exchange that was apparently obtained through a freedom of information request and released on social media.

Dr Flottorp is the research director at Norway’s National Institute for Public Health. The exchange was with Miek Jong, the head of NAFKAM, an agency that collects information about alternative medical approaches. In the exchange, Dr Flottorp complained to Dr Jong about a cautionary NAFKAM report about the Lightning Process (LP). Among her complaints was that NAFKAM did not publicize results from the pediatric LP trial conducted by pediatrician Esther Crawley, a methodologically and ethically challenged professor at Bristol University.

[Read more…] about Trial By Error: My Letter Responding to Norway Health Leader’s Efforts to Denigrate My “Activist” Work

Filed Under: David Tuller, ME/CFS Tagged With: flottorp, Lightning Process, norway

Trial By Error: Some Lightning Process Updates

13 July 2021 by David Tuller

By David Tuller, DrPH

A Final Round in Norway

Lightning Process supporters got some bad news recently when a Norwegian national research ethics panel rejected a proposed study because it was poorly designed and fraught with conflicts of interest, as I wrote about here. But that wasn’t the end of the drama.

Although the ethics panel’s decision was meant to be final and not subject to appeal, the study team appealed anyway, sending a long letter to the ethics panel defending the trial’s methodology and disputing the charges of conflicts of interest. The ethics panel agreed to take up the issue one more time. After another review, the panel reinforced its initial action by firmly rejecting the proposed study a second time. The ethics panel has made clear that it is not categorically against research into the Lightning Process—just this inadequate effort.

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Filed Under: David Tuller, ME/CFS Tagged With: Crawley, Lightning Process, norway, phil parker

Trial By Error: My Letter to BMJ Paediatrics Open about the CBT-Music Therapy Study

25 November 2020 by David Tuller

By David Tuller, DrPH

On November 12, I received my latest letter from BMJ’s so-called research integrity office about the pile of potential research misconduct otherwise known as the pediatric study of cognitive behavior therapy and music therapy as a treatment for chronic fatigue after acute EBV. This study was published in April by BMJ Paediatrics Open and immediately came under sharp and justified criticism–including from me.

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Filed Under: David Tuller, ME/CFS Tagged With: BMJ, music therapy, norway, Pediatrics

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