Trial By Error: NICE Squares Off Against Royal College Bullies Over New ME/CFS Guidelines

By David Tuller, DrPH

For many years, campaigners for psycho-behavioral interventions for ME/CFS have accused patients who objected to the research as being anti-scientific zealots. It was always a ridiculous charge, but developments this week have made it clear, if there was any doubt, that these entitled bullies are the ones immune to the actual evidence.

The National Institute for Health and Care Excellence (NICE), the British organization that develops clinical guidelines, began the process of revising its outdated 2007 ME/CFS recommendations four years ago. It selected an excruciatingly balanced committee, with representatives from various sides of the debate, including several patients. It would not be possible to argue convincingly that the process was stacked against the advocates of graded exercise therapy and cognitive behavior therapy, the two standard treatments.

The final product, which rejected the 2007 recommendations, was approved by everyone in the NICE hierarchy who needed to approve it. And yet on Tuesday NICE announced that it was temporarily suspending the publication planned for the following day in order to consult with powerful medical forces opposing change. In the process, it defended the integrity of the “rigorous” process undertaken to produce the new evidence-based document.

The events have rocked the British medical establishment and triggered widespread domestic news coverage. (In the US, no one seemed to notice.) The conflict has led to a stand-off between rival centers of authority, NICE, whose guidelines wield significant influence on clinical practice, and entrenched physicians organizations whose members have reputational and financial interests at stake in maintaining the status quo. These champions of psychosomatic explanations for the devastating ME/CFS symptoms have long claimed the evidence supports their case, but they seem at a loss when that claim is clearly debunked.

For example, a BBC article about the NICE debacle includes some laughable statements from the leader of one of the royal colleges opposed to the new guidelines. (Despite their august names, the royal colleges are essentially trade associations to promote the interests of the various medical specialties.) Here are the comments from Dr Andrew Goddard, president of the Royal College of Physicians, as reported by the BBC:

“We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.

“There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.

“Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs.

“We hope that in delaying the final publication of these guidelines, NICE will re-consider our evidence submitted and incorporate it into their final publication.”

Perhaps this sort of rambling might have sufficed in the past. At this point, the evidence for the GET/CBT approach has been effectively exposed as of “very low” or “low” quality. Dr Goddard seems to be flailing about in search of a valid point in the face of this unaccustomed public smackdown. Let’s parse his statement.

Dr Goddard indicates that there is “reasonable evidence” that GET “helps” a subset of ME/CFS How is that subset defined, and how is “help” defined, and why does this claim differ from past statements that GET does not just “help” patients but can actually cure the illness? Has Dr Goddard provided this robust evidence of success to NICE? If so, then NICE obviously interpreted the information differently.

Dr Goddard also acknowledges that GET is “not without risk.” This seems to be a new admission from this quarter, since the standard line has always been that GET is proven to be safe as well as effective. Can Dr Goddard distinguish beforehand which patients are at risk of harm? If not, how are patients at risk of harm protected from actual harm?

The fact that the “experts” mentioned multiple times by Dr Goddard “strongly” disagree with NICE’s conclusion does not mean their views should be prioritized–especially absent any trustworthy research to back their assertions. For example, where is the evidence that ME/CFS patients can benefit from what Dr Goddard calls “specialist individualized rehabilitation”?

It is worth noting that this same cohort of “experts” keeps repeating similar things about Long COVID. But how do these people know what they claim to know? Perhaps when Dr Goddard refers to treatments that “we know to have significantly benefited many patients,” he is speaking about his own personal observations and those of his medical colleagues, or rather, their interpretations of their observations. Of course, the whole point of conducting research reviews and developing clinical guidelines is to help the domain of patient care escape the tyranny of physicians’ anecdotal accounts of what they believe does and does not work. Blood-letting was also known to be effective back in the day.


The Times leads the pack in accurate coverage

For years, members of this large group of misguided experts have vilified patients who object to their science and their treatments. In this effort, they have had willing enablers in the domestic press corps, who have in the past swallowed wholesale the anti-patient propaganda disseminated by the Science Media Centre and others involved in this field.

In contrast, The Times has emerged as perhaps the most credible mainstream UK source, thanks to the careful reporting of science editor Tom Whipple and, most recently, senior writer Sean O’Neill. Unlike their colleagues at other news organizations, these two men have listened to patients and to others presenting an accurate counterweight to the psychosomatic narrative. Three years ago, Whipple wrote a story about Virology Blog’s open letter to The Lancet, which slammed the PACE trial’s “unacceptable methodological lapses” and was signed by more than 100 experts, ten members of Parliament, and dozens of patient organizations. More people likely saw that article’s headline–“Call for review of ‘flawed’ ME research in Lancet letter”–then have ever heard of Virology Blog.

Most recently, in covering the NICE saga, O’Neill has pushed back at public misrepresentations of events. Last week, a BMJ news article, after revealing that three committee members had resigned, suggested that the NICE committee was excessively influenced by patients and that the approved guidelines were inconsistent with the evidence. O’Neill fact-checked the BMJ claims in a piece the following day. Here are the relevant paragraphs:

“The BMJ, which first reported the resignations, said there was ‘an unusually high number of patient representatives [on the NICE committee] prompting suggestions this may have led to more weight being place [sic] on patient views than on published scientific evidence.’

However, only five of the 21 committee members were patient representatives, and the lengthy draft report showed clinical research advocating the use of exercise therapy and CBT had been subjected to intensive review and was judged to be of ‘low’ or ‘very low’ quality.”

(On Thursday, The Times also ran this piece by O’Neill on links between ME/CFS and Long COVID.)

Given the impasse over the ME/CFS guidelines, NICE executives and royal college grandees will presumably be hashing things out in a dramatic show-down. Whatever decision is reached would be subject to judicial review. But NICE has already documented, after an intensive and lengthy process, that the evidence for the standard treatments cannot withstand scrutiny. If the agency backs down and waters down its final ME/CFS recommendations because of pushback from campaigners and entrenched medical interests, it will destroy its credibility as an independent arbiter of medical information.

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