By David Tuller, DrPH
The new ME/CFS clinical guidance from the UK’s National Institute for Health and Care Excellence (NICE) is finished—and is to be publicly released on August 18th. In the meantime, this final version has been sent to registered stakeholders—even as three of the 21 members of the committee responsible for the guidance have stepped down without public explanation, per an “exclusive” report on BMJ’s news site. All three quitters represented the wing of the committee that promoted the purported benefits of cognitive behavior therapy (CBT) and graded exercise therapy (GET) as core treatments.
According to BMJ, the three clinicians who stepped down were: Michael Beadsworth, a consultant in infectious diseases at Royal Liverpool University Hospital, and clinical lead for the ME/CFS regional service; Gabrielle Murphy, clinical lead for the fatigue service at the Royal Free London NHS Foundation Trust; and Joanne Bond-Kendall, senior physiotherapist for the specialist pediatric ME/CFS service at Royal United Hospitals Bath NHS Trust.
A fourth committee member, Dr Charles Shepherd, medical advisor to the ME Association, was recently dismissed over conflicts between the confidentiality of the NICE process and his professional responsibilities with the NGO. In a statement published by the ME Association, Dr Shepherd noted that concerns raised by NICE over the issue involved public comments he made only after the draft version was published last November. Nonetheless, he wrote, “NICE received a complaint from someone who is carefully monitoring our social media content…This resulted in a further discussion relating to my continuing conflicts of interest and I have now been ‘stood down’ from the NICE guideline committee.”
If nothing else, the abrupt departures of the other three suggest that the final version is not to their liking—and displeasure from this trio should augur well for be the content of the new guidance itself. Members of the CBT/GET ideological brigades have been on a media rampage since the draft was published last November, criticizing it among other things as the product of undue pressure from patient activists. The NICE committee, using the well-known GRADE method for assessing research, rated all the findings related to CBT and GET as of “low” and “very low” quality—and has therefore been accused of misapplying the rating system.
I was pleasantly surprised by the draft. As for the final version, I have predicted that the committee would stick with its recommendation against GET—the approach investigated by the discredited PACE trial. I also predicted that the final version would continue to recommend against CBT being offered as curative or as a treatment for the underlying illness—although I thought that perhaps some of the language circumscribing its possible use in the form of supportive care might be weakened. We’ll see soon enough.
The draft left plenty of room for psychotherapists, physiotherapists and others to continue to provide services to ME/CFS patients. The final version undoubtedly will as well. However, it will hopefully continue to advise unequivocally that these interventions should not be presented as tools for recovery and should not be based on unproven theoretical formulations about the role of deconditioning and abnormal cognitions in perpetuating symptoms.
These resignations immediately before publication should have been expected. Like former President Trump, members of the CBT/GET ideological brigades have shown themselves to be sore losers. They appear to believe that decisions not aligned with their beliefs and assertions are illegitimate for one or some other claimed reason—most often having to do with the purportedly sinister influence of anti-scientific patients.
In 2018, a core member of the Dutch wing of the ideological brigades resigned from a panel on the issue sponsored by the Health Council of the Netherlands when it rejected his defenses of biopsychosocial treatments. He critiqued the council’s report in a news commentary after his resignation. In early 2002, it was learned that Professor Peter White, a psychiatrist and later one of the lead PACE investigators, resigned along with others from a group designated by the Chief Medical Officer to investigate the illness. According to a BMJ news report, the CMO-panel quitters believed that “the report plays down the psychological and social aspects of the condition and concentrates on a medical model.”
BMJ’s one-sided exclusive
Not surprisingly, BMJ’s “exclusive” article breaking the news of the resignations telegraphed its well-known prejudices in this domain. Professor Brian Hughes, a psychologist at the National University of Ireland Galway, has blogged about the BMJ article, and patient advocate Michiel Tack has posted a rapid response. As usual, both have made incisive and compelling observations.
The BMJ article included some quite stupid points. The reporter suggested that, when the NICE draft was published last November, the presence of “significant changes” from the earlier guidance “raised questions about how the evidence could have shifted so substantially.” Apparently, she was unaware that a lot can change in research during a 14-year period and that it is not unusual for medical practice to undergo shifts based on new understandings during such a length of time.
Then she wrote this: “In 2007 NICE recommended interventions such as cognitive behavioural therapy and graded exercise therapy for people with mild or moderate ME/CFS, whereas the draft update cites a ‘lack of evidence for the effectiveness of these interventions.’ It is unclear, however, how the evidence became unsupportive.”
The last sentence is laughable. It should be extremely clear to anyone who reads the draft guidance and the supporting materials how and why the committee reached its views on the quality and value of the evidence base. The reporter appears to believe that a new guidance should be viewed suspiciously if it adopts a different perspective on the evidence than the previous one. Why wouldn’t it just as likely cast doubt backwards on those who might have misinterpreted the available evidence in the first place?
The reporter also needs to widen her circle of sources. The article quoted a single person about this situation–Professor Paul Garner, the Liverpool infectious disease expert who has argued that he cured himself of Long COVID and ME/CFS with his manly positive thoughts. In his comments, Professor Garner fretted that the three NICE committee quitters were “some of the most respected service providers for ME/CFS.” That might be true. But perhaps Professor Garner doesn’t recognize that the reason to assess the body of research in developing clinical guidelines is to base recommendations on science and not on the biases that can characterize traditional approaches of even the “most respected” providers.
Professor Garner also suggested that the resignations “can only mean a critical breakdown in the methods for formulating the recommendations.” His logic is flawed. A small minority choosing to quit can mean many things other than a “critical breakdown.” (They could, for example, be operating under some collectively shared abnormal cognitions about the scientific evidence.) Their decision does not mean the document itself or the process pursued to develop it is necessarily flawed. It just means three out of a much, much larger group were—presumably–unhappy with how things went down.
It should be noted that NICE went to extensive lengths to put together a very diverse and excruciatingly well-balanced committee. No one could make a serious argument that this group or the process were stacked against CBT/GET advocates. So far, it seems that the great majority of those on the committee agree with what is being published. That seems pretty good to me. Not everything can happen by consensus.