By David Tuller, DrPH
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Last week, Guardian columnist George Monbiot wrote another scathing column about the failure of the UK health care system to address the plight of people diagnosed with ME/CFS. (Monbiot’s previous column on the issue appeared in March; our interview about it is here.) The new column was pegged to the case of 27-year-old Maeve Boothby O’Neill, whose death in 2021 from complications of severe disease has received extensive media coverage in the UK (if not, unfortunately, in the US). But Monbiot also described at length the sorry history of London’s Science Media Centre, a PR agency masquerading as a purportedly neutral arbiter of research, in disseminating fraudulent research in this domain.
To be clear, I use “fraudulent” in the sense of “deliberately deceptive.” I have never claimed that the PACE investigators or their fellow travelers have engaged in the crime of “fraud.” I’m not a lawyer, so that’s not my area of expertise. Rather, I have argued that their research strategies are designed to generate false reports of success and mislead the medical and patient communities. These studies are the research equivalent of a Potemkin village–constructed to look impressive but, in reality, offering nothing of substance, or less than nothing, behind the glittering façade.
In response to Monbiot’s column, the lead PACE investigators (Professors Trudie Chalder, Michael Sharpe, and Peter White) have once again emerged from their cave with a letter defending their honor and promoting their bogus notions. Yet time and science have left these self-important grandees in the dust. They remind me of those ancient Japanese soldiers on obscure islands who didn’t know that World War II was over. Like rotten meat, their theories stink, and the investigators themselves passed their sell-by date long ago. If the PACE trial hadn’t been so awful and caused so much damage and human suffering, their plight would just be sad and pathetic.
Here’s the headline to their letter: “A dualistic view of illness doesn’t help those with ME/CFS.” In other words, this unholy trinity is regurgitating the same tired accusation they have trotted out over and over again–that anyone who challenges their shoddy work has bought into whatever it is they are calling “dualism.”
Their routine bleating about “dualism” is a deflection. Per the descriptions of the interventions–cognitive behavior therapy and graded exercise therapy–the PACE trial was based on the premise that “deconditioning” and “unhelpful beliefs” alone were responsible for perpetuating the devastating physical symptoms characterizing ME/CFS. Refusing to acknowledge that physical symptoms might be caused by pathophysiological dysfunctions sure sounds like dualism to me. Pot, kettle, anyone?
I’m a public health guy, not a biologist or clinician. Early in public health training, students learn about what are called “the social determinants of health.” It goes without saying that someone’s physical and social environment dramatically impacts their health status. But to extrapolate this self-evident concept and insist that a devastating illness can be attributed solely to “deconditioning” and “unhelpful beliefs” about illness—as the PACE authors have claimed for decades—is absurd.
The three professors dutifully note that Boothby O’Neill’s death was “tragic and should have been avoided.” But avoided how? Do they think she chose to starve herself to death—even as she was begging for hospital personnel to provide artificial feeding options? Do they believe she would be alive today if only she’d pursued a course of CBT or GET? Do they think these interventions are likely to save the other young women currently suffering at the hands of the National Health Service?They offer no suggestions on what treatment she should have received. Instead, they blame Monbiot for drawing “generalizations” that they claim are “outdated.”
Given that post-exertional malaise is a defining characteristic of ME/CFS, pushing people to ramp up their activity level despite a resurgence of symptoms is contra-indicated. Nonetheless, these “experts” refuse to acknowledge the harm their approach has caused to untold numbers of patients over the last 30 years. It must be hard to be told, later in your career, that the science to which you’ve devoted so many years is not only incompetent but has also made many patients worse. From that perspective, their reluctance to accept reality is understandable. But it is also unconscionable. In any event, their unwillingness to take responsibility for their errors and the indisputable flaws in their research doesn’t change the facts.
They write that “no relevant paper has been withdrawn and many systematic reviews and meta-analyses have found the approaches to be beneficial.” That statement presumes that the authors of these systematic reviews and editors of the relevant journals are honest brokers conducting honest research. That is not the case. Everyone involved is part of an insular cabal whose members praise and peer-review each others’ work and publish in journals with editorial boards populated by their cronies. This body of research is not science. It’s propaganda.
Thank you David, for spelling it out so clearly. They accuse Monbiot of putting forward an outdated view, but whose views are really outdated? I refer back to the comments I made under David’s last blog. When it comes to functional cardiac symptoms, members of the BPS crew, or at least of that inclination, don’t appear to have been keeping up, and it seems to me that they were called out for that by consultant cardiologists (see the letter available to read here -available to read here -https://www.researchgate.net/publication/350368994_A_further_explanation_for_chest_pain_without_visible_coronary_artery_disease/link/605bea9b92851cd8ce65e1ad/download?_tp=eyJjb250ZXh0Ijp7ImZpcnN0UGFnZSI6InB1YmxpY2F0aW9uIiwicGFnZSI6InB1YmxpY2F0aW9uIn19. )
Incidentally, the paper to which that letter refers was published in the January 2021 issue of the journal “Clinical Medicine” (see here -https://www.sciencedirect.com/journal/clinical-medicine/vol/21/issue/1#article-1 for a list of the articles published in that issue) along with many other articles about functional/medically unexplained illness. That’s JANUARY 2021, in a journal of the Royal College of Physicians. Is that at all relevant in this context? I’ll let you decide.
Spot on! Well spoken, David.
I have sent my october crowdfunding donation for 2024 to you. I very much appriciate your work, and I hope and aspect, that the crowdfunding goal will be reached once again.
Best regards from Denmark
Expect not aspect 🥴
“Outdated”, huh?
People might like to read a perspective on the biopsychosocial (BPS) model by S. Nassir Ghaemi, that was published first in 2009,
(available to read here -https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/rise-and-fall-of-the-biopsychosocial-model/A31DAA3BED6569F6080A1DF2C1D15A64).
I like Ghaemi’s metaphor about food in a restaurant and, developing that analogy, I imagine the BPS model (as it has been employed in relation to ME) as being rather like a bowl of soup in a ‘holistic’ wholefood café/restaurant that comes with a different balance of ingredients according to the kitchen staff’s inclinations on any particular day. That soup always has a good helping of a thin watery ‘psycho-‘ base but the ‘-social’ and ‘bio-‘ components are in much shorter supply, if there at all, with a wholesome lentil or pea occasionally thrown in that comes popping up out of the liquid if there’s a reputational need for the ‘bio’ ingredient to be in evidence that day. There’s never much nutritional value in the soup to get or keep people healthy but the kitchen staff firmly believe that the watery base (that may perhaps keep the customers hydrated, if they’re lucky) is all that their hungry patrons need to restore their vitality and sustain them.
It seems to me that the BPS recipe, as cooked up for ME, may have fallen short by deviating considerably from the original recipe which I understand asked for equal measures of each component….. and, (following Ghaemi’s argument, if I’ve understood it correctly), the eclecticism of that recipe, with the kitchen staff determining the mix according to their own inclinations, may well have led to medical tyranny and tragedy for ME patients.
So it appears that concerns about the BPS model were raised by Ghaemi some15 years ago. Isn’t it time that medicine finally realized that the model is deeply problematic, has had its day and is not compatible with good healthcare in the 21st century?
Wow CT, just look at the names in that list of papers(5:52am post)
and Chalder has co-authored one of them. What’s the relevance of January 2021 though? Could that be in relation to Maeve’s care (or lack of) under the NHS?
Thanks SPC1717, it’s quite a list, isn’t it?
I think that January 2021 paper about medically unexplained symptoms (see here -https://www.sciencedirect.com/science/article/pii/S1470211824033669) is particularly worth a look. I wonder how many UK physicians read that paper in “Clinical Medicine” (of the RCP) when it came out?
It shares a co-author with the paper about functional cardiac symptoms in the same journal issue – the paper that I mentioned in my first comment above, the one that prompted the response letter from 2 cardiologists and a medical trainee.
The Wesellyans just will not accept defeat, will they? If I could have exercised (via GET) and thought (via CBT) myself out of ME/CFS, I would have recovered years ago.