Search Results for: Trial by Error

Trial By Error: British GP Journal Retracts “Opinion” About Lightning Process Written By LP Practitioner

5 March 2022

By David Tuller, DrPH

This week, a journal under the umbrella of the British Journal of General Practice published–and a day later unpublished–a laudatory piece about the Lightning Process from a Lightning Process practitioner. The author, Anna Chellamuthu, is also a GP at Royal Cornwall Hospital. She wrote that the controversial program combining neurolinguistic program, osteopathy and life-coaching cured her daughter of ME/CFS and inspired her to train in the technique herself.

The article in BJGP Life was called “Reflections on NICE, CFS/ME, and the Lightning Process.” It functioned as both a tirade against the new ME/CFS guidelines from Britain’s National Institute for Health and Care Excellence and an advertisement for an unproven commercial intervention. The new NICE guidelines, issued last October, explicitly advise against offering ME/CFS patients the Lightning Process.

Trial By Error: The Usual Suspects Promote a Psychosocial “Research Agenda” for Long Covid

27 February 2022

By David Tuller, DrPH

In what could be described as a form of epistemic land grab, core members of the graded exercise therapy/cognitive behavior therapy (GET/CBT) ideological brigades have proposed a “research agenda” for long Covid that reflects the premises of their crumbling treatment paradigm for ME/CFS. This is not surprising. It has been clear from the early reports of continuing symptoms after Covid-19 that this powerful cabal would seek to colonize the field and devour a large share of the long Covid funding pie.

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

18 February 2022

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: The Lancet Publishes Whine de Coeur from Impassioned GET/CBT Defenders

14 February 2022

By David Tuller, DrPH

The Lancet has just published an anguished whine de coeur from supporters of the graded exercise therapy/cognitive behavior therapy/ [GET/CBT] approach to ME/CFS. (Or CFS/ME, as these authors insist on calling the illness in what those familiar with the debate will recognize as a childish fit of pique.) These impassioned members of the GET/CBT ideological brigades, all from northern European countries, are metaphorically stomping their little feet over the new ME/CFS clinical guideline from the UK’s National Institute for Health and Care Excellence.

Trial By Error: My Exchange of Letters on Amygdala Retraining; That Undead Lightning Process Study

10 February 2022

By David Tuller, DrPH

Earlier this week, I wrote to Helena Liira of the Helsinki University Central Hospital about a new trial of “amygdala and insula retraining” for so-called “functional disorders”—fibromyalgia and irritable bowel syndrome along with ME/CFS and long Covid. (I critiqued the trial here.)

Trial By Error: More on the Dutch CBT Long Covid Trial; Finnish Study of “Amygdala Retraining” Program

4 February 2022

By David Tuller, DrPH

Update: I have sent the following letter to the responsible person listed on the clinical trial registration for the Finnish study of “amygdala and insula retraining”:

Dear Dr Lira–

I am a public health researcher and journalist with the Center for Global Public Health, part of UC Berkeley’s School of Public Health. I frequently comment on research in the field of ME/CFS and related diseases, now including long Covid. Much of this commentary appears on Virology Blog, a popular science site hosted by Professor Vincent Racaniello, Higgins Professor of Microbiology at Columbia University. (I have cc’d Professor Racaniello here.)

Trial By Error: CBT for CFS Should Target “Problematic Worry,” Says New Study from Professor Chalder

28 January 2022

By David Tuller, DrPH

Apparently, after 30+ years of promoting cognitive behavior therapy for chronic fatigue syndrome (so-called), Professor Trudie Chalder has discovered something new: Patients worry a lot! And those with worse symptoms tend to have higher worry levels! She believes CBT for CFS can be tweaked to make a difference. She presents this information in a new study, published in the journal Behavior Therapy–yet another in which she and her colleagues disavow the possibility of inferring causality but use causal language anyway.

Trial By Error: Does “Long Covid” Need Rebranding As “Ongoing Covid-19 Recovery”?

26 January 2022

By David Tuller, DrPH

Now here’s a paper called “The Effects of Messaging on Expectations and Understanding of Long COVID: An Online Randomised Trial,” from researchers at the UK’s Health Security Agency. Two of the nine authors, including the senior author who conceived the study, are also affiliated with a National Institute for Health Research unit that partners with a King’s College London team led by Professor Sir Simon Wessely.

This paper is a pre-print, posted before peer review–so we have no idea what will happen once it undergoes more scrutiny. But the research appears designed to reinforce the notion that psychological and emotional responses to public discussion and framing of post-Covid-19 symptoms could account for much of what patients report about their own condition.

Trial By Error: Q-and-A with Natalie Boulton, Director of “Dialogues for a Neglected Illness”

22 January 2022

By David Tuller, DrPH

More than ten years ago, Natalie Boulton and her son, Josh, made a film called “Voices from the Shadows,” about the plight of ME patients. Natalie, from Bristol, England, was intimately familiar with the issue because of the long-time illness of her daughter, Anna. The film, a harrowing depiction of the ravages of ME, helped pave the way for Boulton to receive a grant from grant-maker Wellcome (formerly called the Wellcome Trust) to develop a series of informational documentaries called “Dialogues for a neglected illness.” The prologue, which references the new NICE guidelines for ME/CFS, can be seen on youtube here.

Trial By Error: French Dogs on the Trail; Impact of Long Covid on the US Job Market

14 January 2022

By David Tuller, DrPH

Can Dogs Smell Compounds Associated with Host Response in Long Covid?

It can be unwise to pay attention to research published on a pre-print server before it has been through a peer-review process. Although passing through peer-review is itself no guarantee of quality, the process represents at least one layer of scrutiny. Nonetheless, some pre-prints just catch the eye. Like this one from France, titled â€œScreening for SARS-CoV-2 persistence in Long COVID patients using sniffer dogs and scents from axillary sweats samples.â€

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