Guardian Publishes Response to Boothby O’Neill Inquest from Ranking Member of the CBT/GET Ideological Brigades

By David Tuller, DrPH

My heart sinks every time I see another ridiculous article from a member of the CBT/GET ideological brigades. They repeat the same bogus arguments that we’ve heard for years—arguments that have already been refuted time and again. So let’s take a look at the most recent iteration of this tiresome dog-and-pony show—physician Alastair Miller’s reflections in The Guardian on the inquest into the death of Maeve Boothby O’Neill. (I have been attending daily in County Hall in Exeter, a university town in southwest England; I posted my thoughts on the first week of testimony here.)

Miller is an infectious disease expert from Liverpool who used to run a local ME/CFS clinic. (I assume it was called a CFS clinic when he ran it.) Before I explain why his article is full of nonsense, I want to acknowledge that he makes at least one reasonably valid point in writing the following: “I know of no colleagues who hold the view that ME/CFS is ‘all in the mind.’”

In general, I believe Miller and most of his colleagues accept that patients’ symptoms are genuine and not imaginary or delusional. But according to the theoretical framing outlined in papers starting in the late 1980s as well as in the fraudulent PACE trial, the symptoms arise solely from the combination of two elements: “unhelpful” or “dysfunctional” beliefs about their illness, which causes them to remain sedentary, and the “deconditioning” that results from this ongoing inactivity. So while I’m sure some doctors do think and express the belief that the symptoms are “all in the mind,” I have never charged the PACE authors and their fan club with holding that specific perspective. The reality is a bit more nuanced.

Beyond that, pretty much everything else included in Miller’s essay is nonsense—although Jon Stone, a professor of neurology at the University of Edinburgh and a big PACE supporter, called it “a great article” on X (formerly known as Twitter). What is most striking, however, is the glaring absence of any mention of the 2021 guidance for ME/CFS from NICE. That guidance found the quality of the research into CBT and GET, including the PACE trial, to be of poor quality and not fit for use as the basis of clinical recommendations. Miller undoubtedly disagrees; after all, he was one of the dozens of co-authors of a screed against the guidance published last year. But readers have a right to know that Miller’s position contradicts the recommendations from the UK’s highly respected authority on clinical care. Omitting any reference to the new guidance is an unacceptable lapse.

As far as the key points included, here goes.

Miller suggests that there have been “years of well-funded research” into the illness. Over the last 30+ years in the UK, as he well knows, that “well-funded research” has mainly been devoted to incessant reiterations of various forms of CBT and GET—and the five-million-pound PACE trial was the apotheosis of this approach. The results of this enormous investment, as outlined by NICE’s analysis of the data, were pathetic—research that provided no viable or legitimate evidentiary basis for the CBT/GET paradigm.

In the case of Boothby O’Neill, we’re talking about a young woman who died from malnutrition because no one at the hospital seemed to know anything about ME/CFS. As has become clear from the testimony, they believed in the CBT/GET paradigm because no one ever told them otherwise, and they offered her the sort of advice parroted by Miller. Maeve had tried CBT. Since it didn’t cure her illness, did she do it wrong?  Even as she was deteriorating dramatically in the last months, she was nudged to make “lifestyle” changes—that is, to try to push herself to do more. Is Miller suggesting that, if she had, she wouldn’t have died?

He then makes this claim: “With appropriate support and intervention many patients will make a full recovery. A rough rule of thumb from clinical experience is that about one-third of patients will make a full recovery, ­one-third a partial recovery and one-third will remain at baseline or deteriorate.”

This might be a “rough” estimate from his clinical experience, but clinical experience is not necessarily a reliable guide. It is critical to remember that the standard UK case definition for what was long called CFS was six months of unexplained fatigue—that’s it. If some of these patients had idiopathic fatigue, perhaps related to undiagnosed depression or anxiety, it makes sense that a chunk of them would improve with CBT and exercise.

In any event, science has developed clinical trials specifically to vet whether assumptions made from reported clinical experience are valid, reliable and accurate. PACE was the clinical trial designed to prove that these approaches worked. It was a farce and a bust, as a reanalysis of the data documented. (I was a co-author of this paper.) Miller obviously doesn’t agree. In a Long Covid webinar hosted by the Royal College of  Medicine in October, 2020, he noted that his clinical experiences “are pretty much in line with PACE.”

As I have repeatedly noted, PACE was put to its best use at my academic institution—the University of California, Berkeley–as a pedagogical tool. My epidemiology colleagues have highlighted it in graduate epidemiology seminars as a case study of awful research. Bruce Levin, a retired professor of biostatistics at Columbia, gave a lecture about PACE called “How NOT to Conduct a Randomized Clinical Trial.” Miller—and Jon Stone–might find that offensive. But this is the verdict on PACE from experts beyond the influence of those pontificating on the matter from their august perches at King’s College London, Oxford, and elsewhere.

In calling for a “new conversation” about ME/CFS, Miller conveniently ignores that he and his colleagues have dominated this field for decades. They have not been interested in any conversations about it beyond those that confirm their biases. Abetted and enabled by the (Anti-) Science Media Centre, they have bullied and disparaged desperately ill patients as dangerous, crazed terrorists—a narrative that, for a while, successfully shifted attention away from the egregious methodological flaws that characterize the CBT/GET research in general and the PACE trial specifically. That era is over.

Then there is this passage:

“Patients can’t exercise their way out of the illness…The fact that we use CBT and other behavioural approaches in no way implies that we do not believe this is a physical condition. After all, we use CBT and rehabilitation to relieve symptoms in cancer, in rheumatoid arthritis and following heart attacks.”

Unfortunately for Miller’s argument, the message from the research, including the PACE trial, is clear—the interventions were explicitly presented as potentially curative. So in asserting now that “patients can’t exercise their way out of the illness,” Miller is trying to rewrite the past. And to compare the CBT designed to ME/CFS patients to the CBT offered to those with cancer or rheumatoid arthritis is a non-starter. The CBT for ME/CFS patients was specifically aimed at alleviating them of their beliefs about the illness. As far as I know, no one has reasonably argued that CBT will cure cancer without actual medical treatment.

This essay reads like it was written to justify the fatal mistreatment suffered by Maeve at the hands of health care providers who unwittingly bought into the PACE and CBT/GET propaganda. It is a disgraceful display of ignorance, hypocrisy, and historical revisionism.  

(View the original post at virology.ws)