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.”
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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.
Comments
12 responses to “Three CBT/GET Proponents Quit NICE ME/CFS Guidance Panel as Publication Date Nears”
Keeping my fingers crossed re the final draft.
Robert Fisk used to say that the role of the journalist was to Comfort the Afflicted and Afflict the Comfortable. The BMJ prefers to kick the afflicted to the curb and comfort the comfortable. It’s not a good look. It will age poorly.
Dr Tuller wrote, “a lot can change in research during a 14-year period”. Except in ME research and treatment. I’ve been sick nearly two decades and over that time nothing has changed when it comes to treatments, abuse by the medical machine, or social support. There is still not even a professional body to regulate and certify ME specialists.
Not only the patients have a form of “Rip Van Winkle disease”. Everything surrounding ME is stuck in time. I have to wonder, will patient advocates still be trying to drive out the psychobabblers a hundred years from now?
Admiring your patience at dealing with these papers and their constant attempts to slink back into the refuted, invalidated, discredited, and disproved practices they have been advocating.
Glad the document won’t have their signatures/recommendation on it – it would taint it if it had been altered to make them happy.
It seems NICE may have finally ‘got it’ and complied with, the legislation:
The Health and Social Care Act (2012), which requires;
*Promote the involvement of patients and their carers in decisions about provision of the health services to them.
*Enable patients to make choices with respect to aspects of health services provided to them.
All the patients on the committee are therefore doing is exercising their legal entitlement and reflecting what members of their national groups have expressed.
If medics like these 3 don’t wish to uphold that fundamental requirement, walk they must.
How can concentrating on a ‘medical model’ possibly be wrong when the biopsychosocial (BPS) model has caused such appalling levels of suffering and harm to ME/CFS patients? The BPS model may have arisen from the best of intentions, but the way that it has been used/corrupted/twisted has caused immeasurable harm. Until somebody comes up with a better, more foolproof model, then it must be safer to revert to its predecessor, unless the failings of the BPS model can be immediately and succinctly spelled out and ALL medics and health professionals instructed in how to avoid its pitfalls. Is that going to happen? I doubt it.
Also, if the minutiae of NICE committee politics warrant a piece in the BMJ, then I’d like to see a discussion there on why Charles Shepherd was ‘stood down’ over his supposed conflicts of interest when another member wasn’t – https://www.virology.ws/2020/10/08/trial-by-error-nice-draft-guidance-coming-soon/ . That looks like double standards to me.
Many thanks to Brian Hughes for his excellent blog about the BMJ article and to Michael Tack for his top-notch rapid response.
Well. If the three had to leave the committe after the report was actually finished, because their opinions did not influence the result to their liking – they must have done a poor job – or what? Not something I would include in my CV, that’s for sure.
“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.”
Firstly may I say I do love your simple prose, “quite stupid”. ‘Quite Stupid’ sums up pretty much the whole BPS Model, especially as it relates to ME. (As far as I’m concerned).
But with regard to the BMJ’s biased reporting, it would do Ingrid Torjesen well to make herself cognisant of the history of the 2007 NICE Guideline. An astute long time advocate on reading Torjesen’s article immediately saw the ‘stupidity’ in her observations given what Margaret Williams had chronicled in her February 2017 article ‘Absence of Evidence’:
“Lack of evidence of both clinical benefit and cost effectiveness
1. In 2001 the York Centre for Reviews and Dissemination reviewed the
available evidence for the clinical effectiveness of CBT/GET in
ME/CFS; the review team’s negative comments referred to
methodological inadequacy; study withdrawal; drop-out rates for
CBT; drop-put rates for GET; the unacceptability of treatments;
reported improvements may be illusory (“the modest gains may be
transient and even illusory”); there was no objective evidence of
improvement and there was little lasting benefit from CBT
(Interventions for the treatment and management of chronic fatigue
syndrome: a systematic review. Whiting P, Bagnall AM et al: JAMA
2001: Sept 19:286(11):1360-1368).
2. In 2005, Bagnall AM et al from the same Centres for Review and
Dissemination produced the 488-page “York Review” of the
“evidence” of the effectiveness of CBT/GET from the same studies
they had reviewed in 2001 (The diagnosis, treatment and
management of chronic fatigue syndrome (CFS) / myalgic
encephalomyelitis (ME) in adults and children – Work to support the
NICE Guidelines).
Notably, given that the same RCTs were scrutinised, all previous
negative comment from 2001 had disappeared from the 2005
version, but in both the 2001 and 2005 versions, two important
issues were not mentioned: (i) corrupted data and (ii) follow-up data
revealed relapse, but the 2005 version was the “evidence” upon
which the NICE Guideline was predicated.”
This “raised questions about how the evidence could have shifted so substantially” too, or at least it did amongst people with ME back in 2005. I remember it well. But I don’t remember the BMJ asking those questions themselves? (If they did please feel free to tag me below with proof).
One could argue that the NICE GDG this time around simply corrected the apparent skewing of the supposed ‘evidence base’ on which the 2007 Guideline was based. The BMJ now seem to be firmly in thrall to the BPS cabal.. the tail appears to be wagging the dog. I’m guessing they wouldn’t have wished these annoying details to have been presented. The truth can be vexing when you’re in the business of what appears to be media manipulation.
Lady Shambles said:
‘This “raised questions about how the evidence could have shifted so substantially” too, or at least it did amongst people with ME back in 2005.’
Coincidentally, 2005 was the year when Fiona Godlee became editor-in-chief of the BMJ. Perhaps her replacement at the end of 2021 -https://www.bmj.com/content/374/bmj.n1819 – will herald in a new era for the journal and for British medicine, away from the “too much medicine” approach that has been plugged since the early noughties. That approach seems to have shifted the responsibility for patient recovery, particularly in relation to unexplained illness, away from doctors and healthcare providers and onto the helpless patient, resulting not only in the misdiagnosis and neglect of many seriously ill people but also in a significant loss of trust in doctors and medicine. The iatrogenic harms that can be caused by the prescription of inappropriate psychological and psychiatric treatments and exercise therapies do not appear to have received enough attention. To my mind, the pendulum has swung from one bad place to another, and the tired cliché that health-anxious patients (especially women) are gagging for over-investigation and over-treatment has been allowed to flourish in healthcare settings during this time. I’d suggest that most patients just want good care that makes them well or, at least, less ill, and if doctors took responsibility and honestly and accurately informed them of the risks of investigations and treatments then a lot of the problems could probably be avoided. I sincerely hope that the person who takes over as BMJ’s editor-in-chief will encourage a more careful, nuanced approach that is led by good scientific evidence, (with an emphasis on the ‘good’).
“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.”
If the BMJ view is that medical evidence doesn’t shift much in 14 years, why does it continue to appear as a weekly journal devoted to “improving the creation and dissemination of research evidence”? Surely a decennial update should be sufficient?
Butterfly to a Stone said “If the BMJ view is that medical evidence doesn’t shift much in 14 years, why does it continue to appear as a weekly journal devoted to “improving the creation and dissemination of research evidence”? Surely a decennial update should be sufficient?”
That tickled me. Good point well made.
If Dr Shepherd had to resign over conflicts of interest, why hadn’t all three who actually make their living from falsely ‘treating’ patients in their CBT ‘clinics’, on the back of the existing guidance that they biased in their favour, been made to resign long before their ‘protest’ resignations?
This capture of the gudance process by vested interests needs urgent investigation in itsef!
In the light of a recent statement released to stakeholders but not patients, I am worried that these three toddlers throwing their toys out of the pram have some very pushy parents threatening to order dilution of the already agreed guidelines.
But what do we know, we are only the patients whose bodies are directly affected by all this obfuscation.