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 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.
I had no clue who he was when I started reading that article but it kinda felt off to me – especially those recovery claims. Now I know why. Thank you.
I would personally be more cynical about the views of the PACE Trial fan club’s adherence to the ‘all in the mind’ dogma. One of The Trial Steering Committee independent members, Meirion Llewellyn, (see The planning, implementation and publication of a complex intervention trial for chronic fatigue syndrome: the PACE trial. Peter D. White,1 Trudie Chalder,2 Michael Sharpe3 ) once decided a major crash of mine, in which temperature perception and control had completely broken down, was “catastrophising” . I keep my receipts carefully 😉 . (Thank you David Putrino for your X -long attack across the bows at the GET/CBT purveyors when you said this: ” This community of patients that you have psychologized and minimized for so long? They are passionate. They are fastidious. They are determined. They are WAY smarter than you, and…they keep receipts. Sleep tight, and, as always: see you in hell. 🤗 /end “).
As it happened his treatment plan almost finished me off (many family members can attest to this). Doing the very opposite of what he suggested, and keeping doctors other than my GP out of the mix, eventually calmed a hellish situation to some degree albeit life never got back to where it had been before that horrible year.
I still have a very skewed temperature situation and recent tests in Germany have provided a good explanation, in terms of autoantibodies, to explain that presentation (joining the dots with good quality biochemistry papers helps).
I knew I wasn’t catastrophising. But I also know that being gaslighted by someone who was later to become a member of the PACE Trial’s steering committee is hardly a surprise at all. I was also gaslighted by his brother, but that’s another story: again, one with witnesses and one which testing proved entirely erroneous. This dogma breeds… it’s ‘catching’.
May I also add that I noticed others mention the inappropriate use of a beautiful picture of Maeve set against the commentary by Miller in the Guardian. I concur with that view. There is something rather cruel and disingenuous about that. The juxtaposition feels very wrong to me.
A need for balance and a different conversation? That’s easy – stop categorizing ME/CFS as a ‘functional somatic syndrome’/psychosomatic condition and accept it as a physical condition on a par with rheumatoid arthritis or cancer. I imagine that ME/CFS patients might be willing then to accept that they’re being offered rehabilitation and CBT for the same purpose as rheumatoid arthritis or cancer patients are offered it – as a helpful adjunct rather than being curative.
Lady Shambles commented:
“I would personally be more cynical about the views of the PACE Trial fan club’s adherence to the ‘all in the mind’ dogma.”
So would I. It seems to me that when their psychosomatic hypotheses have run aground, rather than ditching them and going back to the drawing board, instead they’ve tweaked them and carried on….. and that one of those ‘tweaks’ has been to make out that they don’t/no longer/never did adhere to the “all in the mind” dogma because they know it isn’t supported by the evidence and they don’t want to be challenged and found wanting on account of that. But if they truly believed that it’s not “all in the mind” then wouldn’t they be fiercely countering that narrative whenever they come across it in the medical realm? I see little evidence of that. What I do see is them telling patients that “it’s not all in the mind”, I assume to lull them into a false sense of security, but the psych/behavioural aspect (CBT/GET paradigm) still appears to be at the forefront of what they do and are about.
David wrote:
“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?”
They say there needs to be balance but where is the balance if psych/behavioural considerations repeatedly come before the physical health of the patient and if patients can’t get past that psych block to have their problems properly investigated and taken seriously?
The ‘we don’t believe it’s all in the mind’ backtracking is expected, they want to rewrite history so they aren’t losing jobs and gongs.
I find it rather evil that they wade in on this particularly upsetting inquest about Maeve and want balance.
The PACE Cabal have goaded us, denied our illness has any biological basis, even though thousands of papers say otherwise & they’ve offered GET & CBT in clinics which made thousands of patients worse.
They ignore patients cries that these treatments have harmed, often citing that so many recovered in their clinics but never supply data. They don’t listen but faux care.
We need them to back off, to allow biomed research to do it’s thing, to stop diluting the press confusing medical staff about our illness. It’s creating more harm.
Carla, Millie and Karen have been harmed by this BPS theory, infecting the mindsets of Drs who treat them, leading them to make mistakes in treating themselves vulnerable women.
If Miller is so concerned about the situation for M.E patients, he needs to stop writing articles and leave his ego in a padlocked box.
“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.”
Alistair Miller’s quote and similar comments are so disingenuous since it is a totally false comparison to make. Yes, indeed, CBT may be used for patients with those diseases, but only ever as a TINY PART of a much wider therapeutic arsenal including treatments which actually tackle the disease itself. No one is offered CBT INSTEAD OF other treatments, nor told that’s all there is to ‘treat’ your condition. How would it go down if they were, I wonder?
Thanks so much David for your work.
I pretty much tear up with relief every time I read anything written by you David Tuller. You have no idea how much your truth telling matters. I hope I live to see the day when doctors rearrange their chairs in their office that little bit closer in preparation to compassionately deliver the devastating news that their patient has the disease ME. And that, when that patient goes home and tells their family and friends, their news is appropriately met with shock, concern and kindness. Casseroles are brought, children are comforted, and the newly diagnosed patient, rather than being met with stigma, disbelief, and suspicion, is supported and cared for. Only then we will know that the medical profession, and wider society, knows, respects, and understands (as with other life devastating diagnoses) the gravity and seriousness of this life wrecking disease.
We all need to start laying complaints to any media outlet that promotes the CBT/GET nonsense without having any rebuttal in the article. It’s dangerous publishing that 1/3 of patients recover when they actually don’t, as families, friends doctors and nurses may read that and push ME/CFS patients into a worsening physical state.
Along with what David said, we know some patients in the PACE trial highly likely didn’t have ME/CFS because ‘Post Exertional Malaise’ PEM wasn’t even required. If PEM is removed from the criteria we get all sorts of fatiguing conditions slipping in. Depression being one, but there’s plenty of people who have unexplained fatigue that clearly don’t have ME/CFS, meaning those participants in a trial totally muddy the data. Fact they make it invalid. That trial is an utter embarrassment to science. Yet we have these ignorant clowns in the medical community still regurgitating its nonsense. And just as bad The Guardian printed an article on it.
To lay a polite but assertive complaint to ‘The Guardian’ here’s their website complaint page…
https://www.theguardian.com/info/2014/sep/12/-sp-how-to-make-a-complaint-about-guardian-or-observer-content
It’s not quite accurate to say that
“no one at the hospital seemed to know anything about ME/CFS,” or that “they believed in the CBT/GET paradigm because no one ever told them otherwise.” Dr. David Strain, one of the UK’s leading experts on ME and medical director of Action for ME, is on staff at that hospital. No one notified him there was a patient with severe ME in the hospital or consulted with him regarding her care.
If you have a patient with a disease you know little about, whose condition is so severe they are bedridden and near death, and there is an expert on that disease on staff at the hospital, why wouldn’t you consult him? And why would you ignore what the patient’s GP was telling you about her condition?
I think saying that they believed the CBT/GET because no one told them otherwise is giving them an undeserved pass. I think it’s more accurate to say that they believed in the CBT/GET and refused to listen to anyone who might say otherwise.
I fear that this represents a (quite misogynistic) belief cult in the NHS. It looks to me like doctors have either been indoctrinated or have opted to believe that mental issues are the most likely driver of even severe levels of unexplained physical suffering and deteriorating physical health. (I suspect it’s a mixture of the two.) Starting from a point of resenting their patients (-https://bjgplife.com/unlearning-resentment/) may not help and I imagine that being taught that women are 3 to 4 times more likely to suffer from such ‘functional’/’MUS’ issues and that MUS sufferers can have a really bad effect on their doctors (-https://bjgp.org/content/67/656/106) might only add to the resentment and stigmatization of this patient group by those who should be caring for them. Doctors’ ‘out’ from their uncomfortable feelings when faced with a severely ill patient who may not deserve their resentment but who nonetheless challenges so many of their firmly held beliefs about the medicine they’ve been taught and their own role – the easy path for them to follow – may then be to seek comfort in their belief-system and put the patient’s physical suffering down to equivalently severe mental issues that must be addressed via a firm and resolute mental health approach that the patient simply must agree to to save themselves. In other words, the patient has to be converted to their belief-system for their own good. It may take time to bring them to that point but the patient’s prolonged suffering will likely deliver them there in due course if the doctors’ message doesn’t waver and there is nothing else on offer. The patient will most likely at some point realize that they must submit and engage, rather like a horse that is broken in. Any doubts that doctors may have that they might be wrong, that something terrible might happen, are perhaps put to rest by their quasi-religious texts that seem to reassure them that misdiagnosis rates are pretty low and not too much to worry about. (If only they were told about the limitations of the evidence behind those claims.)
I understand that authors including Dr Miller have argued that NICE should take action to revise its current guideline on ME/CFS -https://jnnp.bmj.com/content/94/12/1056. If NICE is to spend time on anything, I think it should take a good look at the evidence base behind the MUS/’functional’ project (that includes ME/CFS) that has been embedded into NHS healthcare across the UK. It seems to me that a NICE review of that is way overdue.
Thank you for this blog post and specifically your comment that:
Omitting any reference to the new guidance is an unacceptable lapse…….. (By Dr Miller.)
I have written to the Observer Editor ( text below) in just those terms:
In the case of ME/CFS all the current evidenced facts and risks associated with the diagnosis and treatment of ME/CFS are clearly set out in NICE Guideline 206 on ME/CFS issued in October 2021. Dr Miller omits to mention this.
He also fails to fully explain the extremely limited/minor non curative role that psychological support has in treating ME/CFS and should only be provided if the patient indicates they want it.
The law governing medical practice requires Doctors to gain the patients/publics ‘fully informed consent’ at all times and not to pressure the patient/public in any way to choose one medical view/treatment over the other. Legal precedents relating to the need for informed consent to include an explanation of the evidence base for diagnosis or treatment include Montgomery v Lanarkshire Health Board (https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf).
Dr Millers observations and comments in his ‘medical opinion piece’ are both factually incomplete and missing any explanation of reliable evidence to support them. As a Medical Professional his incomplete and unevidenced comments are legally and ethically unjustifiable. Not giving the full factual medical information as required by the ‘Montgomery Judgement’ is misleading and coercive.
Dr Miller presents himself as a ‘de facto medical expert’ on ME/CFS but in this instance he has not met his legal and professional obligations as a Doctor. The reader, at the very least, should have been directed to the 2021 NICE Guidelines for the full factual/evidenced explanation of the different medical/treatment views around ME/CFS.
RM:
Excellent comment / letter. Thank you.
“… 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.”
So a man who ran a clinic specifically on the claim that he had a nona fides treatment for a particular illness, is content that one third of his patients will either die of their illness or die with their illness.
This man, clearly, never had a curative treatment for the illness that was his bread and butter, and has been a complete disaster for one third of all patients sent his way!
Shouldn’t the police be looking into this?
I have very severe ME and I apologise in advance because I haven’t been able to have all of your article read to me, so this may be out of context. But I hope you know that Jon Stone is a ‘functional neurology’, FND proponent. Having unexplained symptoms? They’re very real to you and we’re very sympathetic but the cause is repressed trauma etc.
Unless his views have changed…
PS There’s no neurologist in my city who isn’t infected with the FND stuff