Lightning Process

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.)

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.

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.

Trial By Error: Lightning Process Star Complains About NICE; Struthers Nudges Cochrane to Keep Up

3 December 2021 by David Tuller

By David Tuller, DrPH

Another Anti-Science Campaigner Takes Aim at NICE

The anti-science zealots do not give up easily. Now Live Landmark, the Norwegian Lightning Process practitioner, has written an opinion piece blasting the new evidence-based guidelines for ME/CFS from the National Institute for Health and Care Excellence (NICE). I assume she is not just upset that the document bars standard interventions like graded exercise therapy (GET) and a form of cognitive behavior therapy (CBT) but that it also specifically bars the Lightning Process (LP), her personal specialty.

Landmark and her comrades in the GET/CBT/LP ideological brigades have been humiliated publicly by NICE, so it is understandable that they are throwing tantrums–even one as divorced from reality as this article. Landmark’s arguments can’t be taken seriously–except perhaps by those whose core financial and reputational interests are threatened by NICE’s in-depth analysis of the deficiencies of the evidence.

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 wasnâ€™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 trialâ€™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 Processâ€”just this inadequate effort.

Trial By Error: More on the Lightning Process and the Science Media Centre’s Collusion With UK Journalists

22 April 2021 by David Tuller

By David Tuller, DrPH

*April is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism at the universityâ€™s Center for Global Public Health. If you would like to support the project with a donation to Berkeley (tax-deductible for US taxpayers), hereâ€™s the place: https://crowdfund.berkeley.edu/project/25504

My story on the Lightning Process this week, published by Coda Story, was pretty long. Even so, it didn’t cover everything I would have liked to include. Here a bit more about the issue.

As we now know, the pediatric Lightning Process study conducted by Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician, violated core concepts of scientific inquiry but was published anyway. BMJ whitewashed what appeared to be research misconduct by posting a 3,000-word correction/clarification rather than retracting the paper.

In retrospect, those in the ME/CFS patient and advocacy community who challenged Professor Crawley’s decision to study the Lightning Process in kids were prescient: It was a bad idea. Nonetheless, this understandable negative reaction became part of the so-called Science Media Centre’s scheme to orchestrate press coverage about what it purported was a coordinated campaign of harassment against researchers in this field. In 2012, Professor Crawley herself wrote an essay on the issue for the SMC’s tenth-anniversary publication, “Views from the front line.” under an ominous headline–“Threats of persecution.”

I can easily believe that troubled individuals sent Professor Crawley and others hateful and vicious messages. Perhaps some of these messages amounted to death threats, as has been alleged. But it is also true that this particular group of researchers frames tough criticism as “harassment,” as I know very well myself. After all, Professor Crawley publicly accused me of libel without basis and suggested my actions warranted police intervention, as if I threatened her person rather than just her professional reputation.

In any event, the SMC strove mightily to portray elements of the ME/CFS patient community as a menaceâ€”a simmering brew of hysterical, unhinged, dangerous, and anti-science zealots. The effort was a rousing success. The effect of this framing, and perhaps the goal, was to shield the SMCs favored researchers–the PACE authors as well as Professor Crawley–from legitimate scientific scrutiny. And UK reporters certainly enabled them in this endeavor.

In 2019, for example, both Reuters and The Guardian published articles that portrayed Oxford psychiatrist and PACE author Professor Michael Sharpe as a scientific martyr bravely confronting harassment from patients–and from me. Both articles failed to explore the scientific questions surrounding the PACE trial and the possibility that Professor Sharpe and his colleagues engaged in serious research misconduct in how they conducted it and reported their findings.

Alongside Professor Crawley’s testimonial in the SMC’s tenth anniversary celebration was one from the BBC’s Tom Feilden–a prominent reporter who decided to shill for the organization in his spare time. (Kate Kelland of Reuters made a similar decision to flack for the SMC, as discussed here.) In his essay, he described how the SMC packaged a story for him about the harassment experiences of Professor Crawley and other investigators. Before interviewing them, he conducted his own review of the matter:

“I set about researching the issue on the internet. At its heart seemed to be the classification of CFS as a psychiatric condition. The assumption underpinning much of the most vociferous comment from a small cabal of campaigners seemed to be that this amounted to an attempt to dismiss sufferers as either mad or malingerers. The real cause was an, as yet, undiscovered virus, and anyone who demurred was involved in an elaborate conspiracy.”

**********

A very stupid notion

To anyone paying attention, Feilden’s account parallels the party line of the biopsychosocial ideological brigades and their fellow travelers at the SMC. According to this theory, patients reject PACE and related research because they are prejudiced against psychiatry and against people with mental illness.

It is hard to express how stupid this notion sounds to anyone who has actually engaged with patients. Had Feilden extended his research beyond “the internet” and spoken with the many smart people making cogent scientific arguments against the research being conducted by Professor Crawley and others, he might have learned something to challenge his misconceptions. Instead, he wrote this: “But it was when she [Professor Crawley] got involved in a study to assess the efficacy of one particular treatment, a therapy known as the lightning process, that the trouble started.”

If Feilden knew anything about epidemiology or clinical trial design, as the patients he dismissed as a “cabal of campaigners” apparently did, he would have recognized that the Lightning Process study was problematic from the start. Perhaps he took it for granted that the research was sound and could produce robust results–after all, the experts at the SMC believed in it. Maybe Feilden thought he didn’t need to bother double-checking with any independent sources outside the SMC bubble.

And he appeared to trust the SMC to not only vet the science for him but also do some of the journalistic legwork. Here’s what he wrote:

“We could, and would, have run the story without the help of the SMC. But it would have been without the personal insights or reflections of those at the sharp end of the controversy. It was the SMC that had persuaded, supported and prepared the scientists to speak out on Today. Without this we would have been on the outside looking in, and the story would have been the lesser for it.”

Like Kelland’s admission in her own essay that she preferred to outsource her professional judgement to the SMC, this is, or should be, an embarrassing statement for a journalist. Feilden relied on the SMC to perform some of a reporter’s primary job functions–finding sources, engaging with them, earning their trust. He appreciated that the SMC “prepared” –whatever that means. (Personally, I prefer talking to sources that haven’t been “prepared” beforehand by public relations specialists with a specific communications goal in mind.)

Now let’s look at what happened from the perspective of the SMC. In 2013, the organization issued a three-year review of its “mental health research function.” The successes of this arm of the SMC, according to the review, included working with investigators who “have found themselves in the firing line from a small group of extremists who are opposed to psychiatrists or psychologists doing research on chronic fatigue syndrome/ME.”

Among the positive outcomes of its efforts, noted the SMC in the mental health function review, was the high-profile report from Tom Feilden:

Tom Feilden, science correspondent for BBC Radio 4’s Today programme, won the UK Press Gazette’s first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME. The SMC had nominated him for the award.

So let’s get this straight: The SMC found the sources, persuaded and “prepared” them to talk to the media, and “gave” the story to Tom Feilden. Then the SMC nominated Tom Feilden for an award for the story it prepared and gave him. Tom Feilden won the award. Then he wrote a promotional essay for the SMC.

Hm. Nice! Great that things worked out so well for everyone.