By David Tuller, DrPH
For years, Londonâ€™s Science Media Centre has fiercely promoted research into graded exercise therapy (GET) and cognitive behavior therapy (CBT) for the illness or cluster of illnesses variously referred to as chronic fatigue syndrome, myalgic encephaloymyelitis, CFS/ME, ME/CFS, and other names. Some of the prominent experts in this field have had close relationships with this specialized public relations agency.
(The SMC also promoted Professor Esther Crawley’s disastrous pediatric trial of the Lightning Process but did not note that this study was later slapped with a 3,000-word correction. The agency has never responded to my many questions about this issue.)
But the SMC’s response to the new ME/CFS guidelines from Britain’s National Institute for Health and Care Excellence (NICE) suggests a shift in approach.
Guardian columnist (and alleged long COVID superspreader) George Monbiot skewered the SMC in 2003, outlining its links to the odd political movement called Living Marxism and related organizations. (He did not detail the leap from that past weirdness to GET/CBT and Lightning Process booster.) In any event, as criticism of the PACE trial and related research gained ground, the SMC was involved in orchestrating a negative publicity campaign that portrayed patients as potentially unbalanced and dangerous anti-science zealots.
The many articles on this themeâ€”in BMJ, The Times, Reuters, The Guardian and elsewhereâ€”continue to be cited as proof that patients, and others associated with them, behave badly. The SMCâ€™s destructive and inflammatory efforts to frame reasonable and legitimate criticism in this domain as a form of harassment has seriously damaged the public discourse. The agency owes patients in particular an enormous apology for this offense.
So. Last November, when a draft of a new ME/CFS guideline recommended against GET and against CBT construed as curative, the SMC posted a predictable round-up of petulant comments from the usual suspects: specifically, the three lead PACE authors (Professors Trudie Chalder, Michael Sharpe and Peter White), a like-minded colleague (Dr Alastair Miller, an internal medicine and infectious disease physician), and the august Professor Sir Simon Wessely himself. The assertion that GET and CBT were â€œevidence basedâ€ appeared multiple times. (Only later did the SMC add comments from a supporter of the draft guideline, in what seemed to be a nod at balancing the collective whine from Sir Simon and cronies.)
Hereâ€™s part of what I wrote at the time:
Perhaps the organization [the SMC] is so thoroughly steeped in its own bias that it was unaware how biased it showed itself to be in its immediate choice of commenters. The decision to highlight responses from those with the most at stake in the ongoing collapse of the GET/CBT treatment paradigm demonstrates how seriously they take the threat to their hegemonic reign over the issueâ€¦
They repeat arguments about â€œevidence-basedâ€ treatments but fail to grapple with an inconvenient fact: The NICE review of the body of research rated the quality of evidence from these studies as â€œlowâ€ or â€œvery low.â€ If an â€œevidence-basedâ€ treatment is based on evidence of very low quality, the treatment itself is also likely to be of very low quality. In that case, protesting that the treatment is â€œevidence-basedâ€ is not likely to be a persuasive or effective strategy.
The August 17th Pause…
When NICE announced on August 17th that it was halting publication of the guidelines, the SMC disseminated another round-up of comments, with three supporting the decision and only one opposed. The Royal College of Paediatrics and Child Health. among whose ranks are some GET/CBT fanatics, noted that it was “very pleased that this process has been paused.” Professor Chalder again merited an appearance in the round-up, arguing that pausing the publication was â€œthe right thing to doâ€ because â€œthe messages were confused and clinicians would not have had clarity on evidence based best practice.â€
In fact, the main messages from the guideline–that GET and CBT-as-cure were no longer recommended–were not “confused.” Professor Chalder is the one who’s been confusedâ€”and deludedâ€”about the credibility and quality of her work. She has sought for decades to prove the effectiveness of GET and CBT. Her own research has often documented the opposite, no matter how often she misrepresents her findings.
Another GET/CBT “truther,” the aforementioned Dr Alastair Miller, demonstrated that he also misunderstands the evidence base. â€œSince the NICE guidelines of 2007 further trials have supported the use of CBT and GET,â€ he stated. Dr Miller is apparently either unaware of or uninterested in the flaws that mar this research base as well as studies arising from clinical practice. (In a Royal Society of Medicine presentation on Long COVID during the first year of the pandemic, Dr Miller suggested the PACE trial suffered merely from “a lot of bad press,” not from disqualifying methodological and ethical flaws. )
Before NICE ultimately published the guideline in October, some members of the patient community wondered how the SMC was preparing for release of the final version. Who would the agency trot out this time to speak on behalf of the discredited PACE trial and related research? So it was a bit of a surprise to see that the SMC round-up on the publication included more thoughtful and positive remarks from experts outside the ranks of the GET/CBT ideologues than the obligatory defenses from those on the losing side of this paradigm shift–that is, people like Professor Chalder.
The first commenter was Caroline Kingdon, a nurse and researcher with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine as well as a member of the NICE ME/CFS guideline development committee. She stated that the new document would “positively influence the future diagnosis and treatment” of patients. Karl Morten, principal investigator at Oxford University’s Nuffield Department of Womenâ€™s & Reproductive Health, called the publication a “transformative step.”
Dr David Strain, a lecturer at University of Exeter and a medical advisor to *Action for ME [Initially, I mistakenly wrote the ME Association], said that â€œthe publication of these guidelines will be welcomed by health care providers and people with lived experience of ME and/or CFS alike.” Professor Chris Ponting, a geneticist at University of Edinburgh and an investigator in the DecodeME study, also gave the news a thumbs-up, declaring that they “improve the lives of people with ME worldwide” and “improve awareness that graded exercise often makes ME symptoms worse.”
The most lengthy and authoritative statement came from Kevin McConway, Emeritus Professor of Applied Statistics at the Open University, who is also an SMC trustee and member of its advisory committee. Professor McConway clearly explained and implicitly endorsed NICEâ€™s decision to downgrade studies that failed to take sufficient account of the core symptom of post-exertional malaise, among other methodological issues.
The SMC did allow two of the PACE authorsâ€”Professors Chalder and Whiteâ€”to re-bleat banal points they have made for years. Dr Miller was also given his chance to have another say. Their statements were more of the same blah blah, and were no more convincing than previous statements. If this commentary was meant to advance their cause, it didnâ€™t.
More recently, the SMC highlighted a new study from JAMA Internal Medicine: Association of Self-reported COVID-19 Infection and SARS-CoV-2 Serology Test Results With Persistent Physical Symptoms Among French Adults During the COVID-19 Pandemic. The authors suggest that long Covid symptoms might be linked more to â€œbeliefsâ€ about having had COVID-19 than to actual infection. Brian Hughes, a professor of psychology at National University of Ireland, Galway, has already critiqued the study harshly for its shoddy methodology, which included reliance on highly inaccurate testing.
In years past, I would have expected the SMC’s round-up to include some opining from Professor Sharpe or Professor Chalder (or other GET/CBT brigadiers) on the role of unhelpful cognitions in perpetuating symptoms and related nonsense. Instead, Professor Kevin McConwayâ€”the SMC trustee and statistics expertâ€”provided a dispassionate analysis of the study, including why it is “potentially very misleading to take its results at face value.â€ Two other experts also raised serious concerns under the SMC’s umbrella.
No one endorsed the findings. Perhaps it was easier for the SMC to take such a stance when it involved a non-British study. In any event, whether this interesting development indicates anything about the SMC remains unclear.