By David Tuller, DrPH
When it comes to ME and ME/CFS, The BMJ—formerly called The British Medical Journal but now, like the food franchise once known as Kentucky Fried Chicken, officially reduced to a mere acronym—is a long-time champion of the “biopsychosocial” ideological brigades. (I use the “scare quotes” because the term is a misnomer, given that these experts focus pretty much exclusively on the “psycho” and “social” while largely ignoring the “bio” part of the equation.) So it should not surprise anyone that The BMJ recently published yet another ignorant and misguided screed from this crew—a commissioned opinion piece titled “Patients with severe ME/CFS need hope and expert multidisciplinary care,” from Miller et al. (I first posted about this propaganda piece a few days ago.)
Indeed, The BMJ, and the many other titles under the BMJ publishing umbrella, have for decades provided opportunities for the GET/CBT zealots to air their theories about deconditioning and problematic illness beliefs as causal factors for ME/CFS—theories now extended to Long Covid. A 1989 letter written by Dr Melvin Ramsey, an early ME researcher, reveals the historical nature of this prejudicial and biased approach.
Dr. Ramsey investigated the 1950s disease outbreak at London’s Royal Free Hospital, the event that subsequently gave rise to the name “myalgic encephalomyelitis.” In 2021, an invaluable Twitter (now X) account, Royal Free 1955, which has released an impressive archive of relevant documents, posted Dr. Ramsey’s letter. In the letter, addressed to someone named Edith, Dr. Ramsey discussed the challenges he was confronting in trying to publish ME-related research. Here’s the key section:
“For many months we have been in difficulty by the influence exerted by a psychiatrist, Dr. Simon Wessly [sic] who has secured for himself the position of referee to the BMJ whose Assistant Editor has been strongly anti-ME and we cannot get anything published in British medical journals in our favor. Simon Wessly cuts right across my fundamental tenet of “rest” for chronic M.E. cases and tries to get them admitted to Psychiatric Units where they are immediately put on vigorous exercise.”
The BMJ’s skewed view of this issue continued during the reign of Dr Fiona Godlee, the previous editor in chief. I had many go-round with Dr Godlee, who stepped aside in 2021, over some of the nonsense published in various BMJ journals during her tenure. That included the report on the fraudulent pediatric study of the woo-woo Lightning Process conducted by Professor Esther Crawley, Bristol University’s ethically and methodologically challenged pediatrician and grant magnet. (Professor Crawley has since retired from the university and from medical practice, for reasons that have not been publicly explained. No great loss!)
That clinical trial, published in 2018 in BMJ’s Archives of Disease in Childhood, violated core principles of scientific research, rendering its findings unreliable and essentially uninterpretable. Specifically, the authors recruited more than half the participants before the trial was formally registered, and swapped primary and secondary outcomes after having collected much of their data. All major medical journals have policies forbidding such actions, none of which were revealed in the published trial report. The paper should clearly have been retracted. Instead, it now carries a 3,000-word correction and a 1,000-word editorial note offering tortured but unconvincing excuses for why it was re-published with the exact same findings.
Dr Godlee’s successor was Dr. Kamran Abbasi. I have had prior dealings with Dr Abbasi as well. He was formerly the editor of the Journal of the Royal Society of Medicine. During his tenure, the journal published a seriously problematic paper whose authors included Professor Sir Simon Wessely and Trudie Chalder, King’s College London’s mathematically and factually challenged professor of cognitive behavior therapy. The paper was called “Cognitive Behavioural Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK.”
Among other concerns, the authors made causal claims of success for their intervention even as they acknowledged that their observational study was incapable of documenting causal relationships. Dr Abbasi refused to take any corrective action. We ended up publishing our critique as a full-fledged paper in the Journal of Health Psychology.
In other words, Dr Abbasi protected Professor Sir Simon, Professor Chalder and their colleagues from accountability for their indisputable errors. His failure to pursue the necessary steps to ensure the accuracy of the scientific literature was extremely disturbing and represented a violation of his responsibilities to both the field of medicine and the general public. Dr Abbasi’s decision revealed his true colors—and his biased approach to this issue. No one should expect anything different from him during his stewardship of the BMJ stable of publications.
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Snippets from some of the rapid responses
The recent opinion piece has now racked up more than a dozen rapid responses, many of them quite eloquent in their expressions of dismay at the bogus arguments advanced by the authors. I’ve included a few quotes from these responses here.
Elke Hausmann, GP in Derby: “There are thousands of us, including many doctors with Long Covid or ME, who argue that continuing to invest in researching mind/body approaches is taking away from the real research we need, into understanding the underlying pathophysiological mechanisms at play in ME and Long Covid, which has always been where progress in medicine and medical treatments has come from.”
Tom Parsons, severe ME patient in Suffolk, England [I originally wrote that Parsons was from Sussex, not Suffolk; I apologize for the error]: “The so-called biopsychosocial approach is continuously presented as a new and cutting-edge approach to treating people with ME/CFS when it has been the dominant treatment paradigm in this country and elsewhere since the 1990s and, in that time, its advocates have failed to produce any good quality evidence that these approaches help people recover any significant degree of functioning. To present these approaches as exciting new science is, to borrow a phrase, serving old wine in new bottles.”
David Putrino, neuroscientist and professor at Icahn School of Medicine at Mount Sinai, along with more than a dozen other experts and patient advocates: “Miller et al continue to promote the unsubstantiated claims that ME/CFS is deeply rooted in psychosomatic aetiology and occurs due to a combination of deconditioning and “unhelpful illness beliefs.” They argue that “the patients’ belief that they won’t recover can harm their mental wellbeing.” These assertions lack credible scientific basis, contradict current NICE guidelines, and risk causing further harm to people with ME/CFS.”
Dom J. Salisbury, patient advocate in Lancashire, England: “In their opinion piece, Miller and coauthors ignore PEM when listing common symptoms of ME/CFS. This is an attempt to continue framing this illness as belonging to a family of ‘fatiguing conditions’, which, along with other ‘medically unexplained symptoms’, they argue can be treated with psychological interventions and rehabilitation.”
Michiel Tack, patient in Hulst, The Netherlands: “The view that ME/CFS is maintained by unhelpful thoughts and behavior is poorly supported by current evidence and may unfairly blame patients for their illness and failure to recover. This model has been tested in the past with disappointing results, which is likely why NICE no longer recommends it.”
You call this piece ‘ignorant and misguided’ but you don’t seem to be able to break down how it is with any evidence whatsoever. This seems to be an opinion piece that you just don’t like it or the people who wrote it. That’s fine to express but it won’t win you any debate and the vulnerable patients paying your salary deserve better. Throwing about insults achieves….what?
You talk about CBT/GET ‘zealots’ but don’t seem to have realised this letter doesn’t appear to be in support of either of those specific treatments. Would it be worth re-reading it?
You talk about a ‘disease outbreak’ in the 50’s but there is no clear evidence M.E is infectious or a disease. How is it possible M.E is infectious AND a genetic issues DecodeME will solve AND due to broken mitochrondria AND blood clots AND something that can spontaneously resolve occasionally?
The Putrino letter, signed by so many, goes beyond the evidence, which is alarming when medical doctors have signed it. There is, in fact, no published objective evidence of PEM (although I know it’s real) and definitely no evidence which shows us exactly how PEM is distinct from fatigue. This point concerns me the most – the person who actually penned that letter doesn’t appear to know what they are arguing with in the published BMJ piece and even knowledgable M.E patients are raising this point in forums online and are saying they wouldn’t have signed it
I quote ‘There are thousands of us, including many doctors with Long Covid or ME, who argue that continuing to invest in researching mind/body approaches is taking away from the real research we need.’ There are thousands of us (including doctors) who argue that these mind/body approaches are the things that have given us our lives back despite some of us being profoundly ill for many years. Why don’t we matter? We seem to be the detransitioners of the M.E world, where anything we say is dismissed and scoffed at. We aren’t ok with that.
Dear FWM–you are free to express your opinion, as I am free to express mine. I have written so many times that the points these people are making are not founded on the evidence, or they misstate the evidence, or their studies are biased and produce meaningless findings, so I didn’t see any need to repeat myself–especially because many rapid responses did so eloquently.
Miller has been a longtime proponent of CBT/GET–and so they are the ones lumping these interventions together with the Lightning Process and every other mind-body program out there–to these people, these are all essentially similar approaches, since they discuss them collectively as useful. Miller’s claims about PACE–in other venues–that a third recovered, a third improved, and a third didn’t–are completely off-base and untrue.
Garner’s claims of having cured himself through his powerful cognitions have no validity since he seems to have recovered spontaneously after a bad six months. Most people recover after a viral infection, including COVID-19, and attributing recovery after six months to anything but natural bodily processes makes no sense and is completely unwarranted. His story and his timeline of recovery simply do not add up. He was already walking 5K a day before he did whatever he did that he claims “cured” him. So he was already improving dramatically–but he attributes it to the program he did and his manly thoughts, not to the natural recovery process.
I have always said that people can do mind/body programs if they want, and I don’t object to them on principle–meditation, positive affirmations, relaxation exercises, etc–those are all fine and obviously many people find them to be useful. So people might benefit and feel better from those things. That’s very different from claiming these interventions will cure people completely in 3 days physiologically because of “neuroplasticity”– and that if that doesn’t happen, it’s because they weren’t doing the program correctly. That’s the Lightning Process approach.
People like Miller and Garner suggest everyone can get well this way–and if they don’t, the implication is that it’s essentially their fault.
In response to ‘FWM’, I think Dr Tuller is entitled to assume that a reasonably intelligent person will see the justification for his critique. The onus is on the authors of the opinion piece to provide evidence. It is extraordinary that something so amateur and lacking in evidence should be thought suitable to publish by BMJ, but it does not come as a great surprise. As FWM points out, these ‘multidisciplinary experts’ probably no longer call their treatments GET or CBT, since the trials of those showed no useful efficacy – when I was grilled by the NICE committee a therapist suggested that the PACE trial did not really matter because everyone had moved on to new treatments anyway. Which of course means that whatever they are providing is not supported by any published trials at all. We might as well call in the homeopaths and faith healers.
Since Covid-19 there have been several people who report getting better having had contact with professionals providing ‘mind-body’ therapy, whatever that might be. No doubt they are well, but that is hardly surprising since post-viral fatigue is often self-limiting. We have no basis for thinking that the ‘therapists’ have done more than be sympathetic while patients improve. We have no evidence that there are any ‘expert therapists’ until we have controlled trial observations. And expert in what? We are not told – just that there should be lots of them – to be ‘multidisciplinary’
I would agree that the Royal Free epidemic is a red herring. It has little to do with the modern concept of ME/CFS. But we do now know that ME/CFS is ‘a disease’. DecodeME aside (yet to report) we know that the group of people picked out by the diagnosis have a specific gene profile (from the Bergen group and now Zhang et al. this month). Moreover, scepticism that ME/CFS might have genetic, infective and other causes suggests a lack of understanding of chronic disease. Pretty much all chronic diseases like multiple sclerosis (DR1 and EBV), rheumatoid arthritis (DR4 and smoking) and lupus (all sorts of things) have multifactorial causes. For ME/CFS we know at least that there are genetic predispositions and that it commonly follows on from infection.
But none of that is directly relevant to Dr Tuller’s grouse – that it is indeed extraordinary that the BMJ should publish a piece as unprofessional and ill-informed as this, based on no evidence whatsoever. The BMJ is supposed to set a standard, not provide advertising space for all comers. And to claim that unevidenced treatment provides ‘hope’ smacks of the sort of paternalism we are supposed to have left behind 50 years ago. The real hope will come from some biology.
It seems to me that, in the UK at least, we’ve gone from a position of too much medicine, where, for example, 30 or so years ago doctors steeped in a patriarchal healthcare system were whipping out women’s reproductive organs for little good reason, to the place we’re in now with far too little medicine but with women still bearing the brunt. As I understand it, the BMJ has been quite instrumental in that pendulum swing and my guess is that’s what’s the leading force behind them commissioning/promoting this stuff rather than it having a particular issue with ME/CFS. If only we all did more exercise and got on our bikes, (so many BPS ideologues seem to be committed bike-riders*), and got our minds in order and adopted the right attitude, then lots of money would be saved and the really sick people – the ones with cancer and perhaps some interesting exotic diseases – would get the health service that they deserve and doctors would have a far more rewarding time of it. It doesn’t appear to matter that (predominantly female) patients with autoimmune conditions are being badly let down by suffering long delays to getting the correct diagnoses because they’ve been misdiagnosed with mental health problems or ‘MUS’, or that doctors who worked on the frontline of the pandemic are now unable to work because there’s too little medicine for the Long Covid they developed. To my mind, the problem is a self-congratulatory attitude that if you’re able to do something then everyone else could achieve the same if only they were as motivated and dedicated to the task and as hard-working as you are. I’d suggest that empathy, which we would hope for in our doctors, is in short supply there perhaps through an inability to see that anyone could be in a different position through no fault of their own. An attitude of individual responsibility seems to have been pushed onto society that we can all achieve our dreams (and good health) if we just try hard enough and the corollary of that is that anyone who doesn’t isn’t trying hard enough and that’s all their own fault. People elevating themselves or polishing their own haloes by finding fault with others – that’s how it comes across to me and I’d say that there’s no place for people with that attitude in medicine.
*I’ve nothing against bike-riding, I used to ride one myself until I couldn’t anymore.
Thank you so much for your tireless work!
I know this will have been looked into before but I tried to find who – if anyone – independently regulates or scrutinises the material published by BMJ and others. I bypassed the Science Media Centre given their history of maligning people with ME and came up with COPE and ICJME as possibilities. Unfortunately though there seem to be virtually no meaningful consequences for publishing unscientific and unethical pieces – and it’s even more difficult to regulate opinion pieces, which may be why the BMJ chose to pedal BPS ideology in that way.
The ICJME has just decided to delist numerous journals because they didn’t pay any attention to their standards of publishing, so that’s something. They’ve also published a piece entitled ‘Predatory Journals: What Can We Do to Protect Their Prey?’ which I thought sounded promising, but in a horribly ironic twist one of the authors is the Head of Research for the BMJ. Aside from the glaring hypocrisy, what are we supposed to do when even the so-called independent regulators are advised by BMJ staff? (Link to the piece: https://www.icmje.org/news-and-editorials/predatory-journals-editorial.pdf)
As for COPE, despite being based in the US – which I hoped may provide some distance from the BPS gang – the executive officer used to work for the BMJ, as did one of the council members. And one of the advisors is currently ‘Research Integrity Manager’ for the BMJ. There are others involved who work/ed for The Lancet and various UK Universities (notably Queen Mary University) that have a history of defending falsehoods about ME.
Short of a lawsuit or public enquiry – neither of which seem probable – how can we hold spreaders of unscientific misinformation to account when there are no consequences for doing so? How much more of this horrific biopsychosocial whack-a-mole will we keep being forced to endure? I’m extremely grateful for your journalism (and that of George Monbiot and others) because it seems to be the only way to call out misconduct.
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I’ d like to remind , to Whom It May Concern that ME,as a Grave Neurological Disease,is accepted not only by the WHO,(World Health Organization),from 1969,but by the ILO,(International Labour Organization),as well.
Thank you, David, for finding the right words to express an unease I feel whenever it comes to the BPS model when talking about ME/CFS. I never can really put my finger on it and as an ME-affected person myself (even worse: woman! (ex) teacher!) nobody takes me seriously when I speak up against the BPS approach. I am immensely grateful for your advocacy and relentless work for us!
“SLOT …” dude up-thread in the comment stream may be on to something.
Gambling may be a large portion of the “ME/CFS” diagnosis.
And like “SLOT …” dude they speak in a strange language as David et alia have surmised.
May I add a twist/turn for questioning the “ME/CFS” realm a bit more … are they using quality DNA sequences in their fundamental analysis of patients (Genetic Constants In DNA and RNA)?
I read every recovery story I can in the hope of seeing PEM being overcome. I have yet to see a single one.
I had a remission after weeks in bed with a virus, negatively thinking I would never get better. I didn’t need a gentle stretchy pace back to normal activity or brain retraining, I was straight out active all day, for the first time in years.
I notice there is a multi person therapy endorsement in the responses.
A title containing ‘what helped us recover’, referring to a list containing people who have not recovered, with a conflict of interest section nearly as long as the response, says a lot about the psychosocial approach.
I do give the response credit for not slagging off patients skeptical of ‘me/cfs recovery’ stories that contain no evidence of PEM (having me/cfs at all) and/or actual recovery.