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.
Here’s what Landmark opines: “Unfortunately, the recommendations made in the new NICE guidelines for chronic fatigue were not based on the published research. This means that the Norwegian Directorate of Health can be confident in ignoring their suggestions.”
The NICE decisions were based on the fact that the evidence in support of the interventions was found to be of poor quality. Landmark might not agree with that assessment and she might prefer her own countryâ€™s health authorities to dismiss it as unwarranted. But she canâ€™t rewrite what happened, nor should the Norwegian Directorate of Health pay attention to her rant. The recommendations against CBT, GET and LP were based on the dramatic shortcomings of the research, which NICE outlined in voluminous detail.
Psychologist Brian Hughes, a professor at the National University of Ireland, Galway, dismantles much of Landmarkâ€™s argument in this twitter thread.
Amazingly, at this late date, Landmark links to the 2011 Lancet publication of the PACE trial as if it offers legitimate evidence and hasnâ€™t been widely debunked in academic and professional quarters, and not just by NICE. She also links to the PACE teamâ€™s reprise in a just-published paper called–without a hint of irony–â€œEvidenceâ€‘Based Care for People with Chronic Fatigue
Syndrome and Myalgic Encephalomyelitis.” In this self-justifying whine, Professors Michael Sharpe, Trudie Chalder and Peter White, the three lead PACE investigators, insist that criticism of their work reflects a big misunderstanding on the part of everyone else. Citing these two articles does not bolster Landmarkâ€™s credibility or the case she is trying to make.
I guess itâ€™s been a disappointing year for Landmark, given that Norwegian research ethics authorities rejected her long-gestating proposed trial of the LP for ME/CFS patientsâ€”a project she was pursuing as part of a doctoral program in psychology. The ethics authorities determined that the study was likely to generate biased results and that Landmarkâ€™s role was fraught with conflicts of interest. Although Landmark fancies herself an expert whose opinions on research should be shared, this official assessment of her work doesn’t induce confidence that she is qualified to pass judgment on or even assess NICEâ€™s methodology.
Caroline Struthers Renews Pressure on Cochrane
In recent years, Caroline Struthers, who describes herself on twitter as â€œa serial â€˜healthy controlâ€™ research participant, citizen scientist, and patient-directed research enthusiast,â€ has politely but rigorously nudged Cochrane to take appropriate steps with regards to its problematic reviews of exercise and cognitive behavior therapy for what it has called CFS. The exercise review in particular has been a controversial document, and the saga has taken multiple twists and turns that are too complicated to enumerate here.
Struthers has posted her various missives about Cochrane on her blog, Healthycontrol.org. Because she understands the details of Cochraneâ€™s processes, she knows how to frame the arguments for maximum leverage and impact. Last month, Struthers sent another well-constructed and cogent letter to Cochrane, triggered by recent developments involving NICE.
Hereâ€™s what she wrote on her blog:
“On 26 November 2021 I wrote to Toby Lasserson, Cochraneâ€™s Deputy Editor-in-Chief, copying in in Gill Leng the Chief Executive Officer of NICE. My letter was prompted by the announcement that NICE and Cochrane have signed collaborative agreement. Among a few other issues, I am seeing reassurance that NICE will manage the risk posed by potentially delegating important decisions about the quality of evidence influencing NICEâ€™s recommendations to an outside, self-regulated organisation.“
It is important to hold organizations to account when they fall short of expectations, as Cochrane has in how it has handled these two published reviews. Until recently, it had allowed the GET/CBT ideological brigades full authority over how the illness was handled. That has changed. In her latest letter, Struthers is appropriately asking Cochrane to clean up after itself and keep up with developments, among other requests. You can read it here.
Alicia Butcher Ehrhardt, PhD says
I am so glad sick people have such champions and advocates – I can’t imagine keeping up with or dealing with all the misinformation and the financial motives (and lately the motive of shoring up reputations) of those who persist in thinking that we enjoy being – and choose to be – sick.
Medicine has a long history of ridiculous claims and ‘cures’ – but science is supposed to be slowly replacing all those with rigorous scientific evidence-based treatments. The snake-oil salesmen got on the train to the next town; the people who promulgate and defend Lightning and GET and CBT have academic positions and recognition they don’t deserve, and don’t want to lose them. Can’t happen soon enough.
Patricia Price says
Could it be rhat Garner, BOS and SMC are trying to discredit NICEs review process, because Cochrane have recently married with NICE?
Ensuring that all “quantitative research” taken into analyses will be of Cochranes perview as relevant research?
Therefor determining what research gets reviewed for what conditions, therefore impacting the the development, research funding or accessibility to possible effective treatments for each condition?
Wouldn’t this be an ideal way of avoiding the 3-4 year review process NOCE went through for the MECFS guidelines?
A way of controlling the narrative. Which treatments are ever implemented. And therefor the cost of each disease burden ?
Yes. I am subtly pointing toward organised institutional discrimination and state corruption.
Patricia Price says
Please excuse my typos. I have limited capacity to type
Cochrane has earned the corporate death penalty and should be dissolved. It is now just another public relations/marketing outfit and we already have the Science Media Centre to do that job for the psychobabblers and other establishment parasites.
I don’t understand how NICE is supposed to benefit from a formal relationship with Cochrane, since NICE already has their own staff to review the research. NICE staff should be actively resisting this move, since the quality of their work and their jobs are in jeopardy.
I view this endeavor as yet another way to slice & dice & privatize the NHS until there is nothing left except minimal care for people too poor to pay for privatized medical care.
Cochrane is clearly attempting to build an empire where they are the gatekeepers of all official medical knowledge. Besides expanding into NICE’s turf, they are also now the official arbiters of medical knowledge at Wikipedia. 
Cochrane’s refusal to retract the exercise and CBT reviews is actively harming us every day. It is way past time to hold them accountable for their actions in a court of law.
When one considers Cochrane’s garbage reviews, the open hostility towards patients and NICE by the “Royal Colleges”, the empire-building by psychobabblers, outrageous statements by nitwits like Paul Garner, the deluge of useless and fraudulent published research, it’s hard to avoid the conclusion that we are in a new Dark Ages.
I am grateful there are still people like Dr Tuller and Dr Struthers trying to keep the candles lit. I hope they have a lot of matches.
 “Cochrane and Wikipedia: working together to improve access to health evidence”
Worrying stuff – agree with the other reviewers on the Cochrane development and its timing.