By David Tuller, DrPH
When researchers cite fraudulent studies in support of their claims, it is best not to take anything they write at face value. That is certainly the case with a recent paper titled “Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach to promote recovery,” published earlier this month in the Scandinavian Journal of Primary Health Care. (I use “fraudulent” here not in the legal sense but in the sense of “deceptive” or “deceitful.”)
As evidence of something or other, the paper’s references include both the fraudulent PACE trial, whose reported findings have been discredited and rejected by leading medical authorities, and a fraudulent pediatric trial of the Lightning Process, in which the investigators violated core methodological principles of scientific research. (The Lightning Process, a woo-woo “brain retraining” program, was created by osteopath and former spiritual healer Phil Parker, who once claimed to be able to diagnose people’s ailments by stepping into their bodies for a look-see.)
The Scandinavian Journal of Primary Health Care has emerged as something of a house organ for members of the biopsychosocial ideological brigades, including prominent non-Nordic fellow travelers like Professor Paul Garner and Professor Trudie Chalder. (The former is the corresponding author of this paper; the latter is one of multiple co-authors.) Both were also co-authors of a similarly misguided document published by the same journal In 2023–a manifesto from the self-styled Oslo Chronic Fatigue Consortium called “Chronic fatigue syndromes: real illnesses that people can recover from.”
The new paper’s goal is to offer primary care physicians a short summary of “contemporary theories of PPS” along with purported “evidence-informed pathways” for treating patients. The research involved a “narrative literature review and consensus development with experienced practitioners.” In other words, the paper presents the beliefs, opinions and biases of a self-interested and insular group of professionals—or cultists, if you will—as if they were actionable facts.
In the abstract, the authors assert the following regarding PPS: “When diagnosis, advice and care are based solely on a biomedical interpretation of symptoms, patients may not improve. This can result in repeated and often frustrating consultations and investigations.”
This statement is undoubtedly true in some circumstances, but it is also pretty meaningless. The statement is also true if “biomedical” is replaced with “biopsychosocial,” to wit: “When advice and care are based solely on a biopsychosocial interpretation of symptoms, patients may not improve. This can result in repeated and often frustrating consultations and investigations.” The question is, which scenario is more representative of reality?
Per the authors’ theories, “symptoms may arise from brain-based responses to perceived threat, influenced by expectations and learned associations,” and these responses “can become unhelpful when benign sensations are interpreted as dangerous.” And the essence of the advice is “validating patients’ symptoms and emotional experiences, providing clear explanations of symptom persistence, and developing personalised management plans that combine biological, psychological, and social approaches.” These approaches “can reduce or resolve symptoms, foster hope and a sense of agency, and often lead to recovery.”
We have heard these sorts of claims from members of the biopsychosocial cabal over and over again. If the authors presented legitimate and robust evidence that their “evidence-informed pathways” produced substantive benefits, that would be one thing. But where is the data showing that their prescriptions “often lead to recovery”? As is, this assertion is pure propaganda. Beyond PACE and the Lighting Process study, the evidence that has “informed” their approach is similarly flawed and untrustworthy, as first-year epidemiology graduate students at Berkeley would quickly understand.
One reference is an infamous Cochrane review called “Exercise therapy for chronic fatigue syndrome.” This review has been widely contested and is no more reliable than the largest included study, which is the fraudulent PACE trial. Another cited study, called “Brief outpatient rehabilitation program for post–COVID-19 condition: a randomized clinical trial,” claimed success even though the benefits reported for self-reported physical function did not reach the predesignated threshold for clinical significance, as I reported in this post.
The paper proposes that clinicians adopt a “stages-of-change” framework from the field of smoking cessation, with recovery presented as within the individual’s power to achieve. The authors do not explain why an addiction template would be appropriate for chronic illness. They also repeat the frequent but unproven argument that having a “strictly biomedical understanding shaped by prior healthcare experiences” is an obstacle to getting better. This argument is generally based on observational studies documenting associations, not causal relationships. It is just as likely, if not more so, that patients who fail to get better are more likely to decide that their problems are biomedical.
Not surprisingly, the paper does not mention the 2021 ME/CFS guideline from the UK’s National Institute for Health and Care Excellence (NICE), which rescinded its own previous recommendations for graded exercise therapy and a curative form of cognitive behavior therapy based on the “unhelpful beliefs” model. Multiple authors of this PPS paper have flatly rejected that document, but pretending it doesn’t exist is to present a distorted version of reality. These folks have clearly lost the plot.
For all that biopsychosocial proponents/ideologues seem to seize on any small signs of improvement arising from their psychological treatments, I see little to suggest that they take much or any notice of biopsychosocial (BPS) harms that are inflicted on patients in response to the sort of BPS dogma that they preach.
I’ve seen such biopsychosocial harm up close. At the start of this decade, a young adult who should have been enjoying the prime of their life was left to suffer in extreme chronic pain (not ME-related) for several years and was forced out of employment because their NHS hospital doctors held (now-proven) false illness beliefs about their pain, didn’t offer an investigation that an international expert (privately) recommended as a first port of call in such cases, and refused to perform a relatively simple operation that the patient and their GP had requested, an operation that immediately removed the pain for good when performed by a private surgeon in North America at the end of 2023.
The NHS hospital doctors appeared to give no consideration to the biopsychosocial risks/harms to the patient of being stuck on strong painkiller medication perhaps for evermore with no quality of life, of being dreadfully sleep-deprived, of being unable to exercise, of being forced out of work and unable to support themself, and of being psychologically traumatized. They seemed to overlook the significant risks of a biomedical deterioration of the condition itself, of the patient’s biological health in relation to a separate diagnosed chronic condition being compromised by such medical neglect (which it almost certainly was), and of the patient self-harming or coming to accidental harm because of the state they were in. Instead the doctors came across as fixated on the idea that the pain was most probably predominantly central in origin (and yet no investigation was done to show this) and that it therefore wasn’t likely to be helped by any medical or surgical interventions; also that the patient may need time to come to terms with their predicament and stop searching for a cure before coming around to the doctors’ way of thinking and engaging with the psychotherapy and physiotherapy on offer. In biopsychosocial terms, it’s abundantly clear that they loused up BIG TIME.
These doctors and hospital managers strike me as sick in the head. They’d apparently rather consign someone to perpetual pain than perform a simple low-risk operation that the patient is happy to consent to and take full responsibility for (whatever its outcome might be). And the irony is that, as I understand it, the patient in question had to take full responsibility for the outcome of a different treatment for their other chronic condition, a treatment that could have led to their death that doctors at the same hospital weren’t prepared to take responsibility for. It is therefore striking that this patient wasn’t afforded the same privilege when the procedure they were requesting might have (or would have) exposed as bogus the medical belief system being imposed on them (and others). Patient autonomy is at doctors’ discretion, it seems, but perhaps is only granted when it’s in the doctors’ own interests e.g. to cover their own backsides.
I hear that there’s been no written or verbal word of apology or regret from the doctors or hospital managers that they got this case so badly wrong. The (leading) NHS hospital trust did however indicate that they had many patients in similar pain predicaments who they believed were also not likely to respond to medical or surgical interventions and who too may need time to come to terms with their fate and to come around to their doctors’ viewpoint/s and management plans. So how many more NHS patients are being similarly neglected and wrongly consigned to a lifetime of severe pain or other debilitating symptoms for the sake of a false belief system amongst medics? And how many investigations that could unpick conditions and inform treatments are being denied to maintain this ideology and/or cut costs?
To me, it’s not just “these folks” who’ve “lost the plot”. I’d say that medicine more generally has lost the plot, especially in the UK, and that public health and economic productivity are highly likely to be suffering as a result.
I’d just like to add:
“Persistent physical symptoms” draws in many different patient presentations and conditions. In many or most cases, because of the nature of the medical symptoms and the problems involved, it’s hard to prove the biopsychosocial (BPS) ideology as conclusively wrong as it clearly was in the case I outlined above. People with chronic debilitating fatigue, for example, probably wouldn’t experience a similar on-the-spot recovery with the right treatment but rather a gradual improvement over time. Most medical treatments take time to have an effect, time that could allow the patient to recover naturally, thus making the curative effect of the treatment harder to prove beyond doubt. That makes this a landmark case, I think, by showing up quite starkly how doctors’ dogged determination to stick to dodgy medical dogma can grossly and wrongly undermine the biopsychosocial health of a patient and so potentially of a much wider patient population too.
To me, the doctors in this case drove a coach and horses through their own BPS model. They didn’t seem interested in biopsychosocial health – if they had been then surely they’d have closely monitored, considered, evaluated and weighed up all the biopsychosocial harms of leaving a patient in pain and suffering, and they’d have worked with, rather than against, the patient to try to achieve the best outcome/s? Instead, they appeared to double down in their quasi-religious dodgy dogma.
While the case I outlined isn’t about ME/CFS, I’d say that it IS about the proven harm of a BPS model that also causes ME/CFS patients immense biological, psychological and social suffering and decline.
“narrative literature review”
One of the better rules of thumb I have found in reading the literature over the years is whenever you see the phrase ‘narrative review’, it usually means that what is about to follow is an ideological manifesto.
Another one is for the word ‘biopsychosocial’. In the current medical climate it is almost always code for ‘psychosomatic’.
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“For all that biopsychosocial proponents/ideologues seem to seize on any small signs of improvement arising from their psychological treatments, I see little to suggest that they take much or any notice of biopsychosocial (BPS) harms that are inflicted on patients in response to the sort of BPS dogma that they preach.”
“To me, it’s not just “these folks” who’ve “lost the plot”. I’d say that medicine more generally has lost the plot, especially in the UK, and that public health and economic productivity are highly likely to be suffering as a result.”
Indeed. There are certainly pathological psychosocial factors in play. But they are secondary contingent ones being generated by the psychosomatic cultists’ rabid insistence on seeing their holy grail everywhere, and forcing that interpretation onto any patient they can get their hands on, with no concern for the appalling consequences.
It is an utter catastrophe. Medicine has lost its sanity and humanity to a rabid malignant cult, that is destroying the profession’s credibility from the inside.
Sean commented:
“It is an utter catastrophe. Medicine has lost its sanity and humanity to a rabid malignant cult, that is destroying the profession’s credibility from the inside.”
I agree 100%.
My spidey senses started twitching when they mentioned that PPS has replaced MUS (which still gets mentioned in connection with FND) but I have no idea where that leaves us re Biased Dangerous Suppostitions (aka Bodily Distress Syndrome).
I wonder if the authors have done much background reading on these topics and, if they have, why they seem to be – possibly/maybe – ignoring some of it eg this:
Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses and Medical Uncertainty
Robert C. Bransfield1,*
and
Kenneth J. Friedman2,†
1
Department of Psychiatry, Rutgers-Robert Wood Johnson Medical School, Piscataway, NJ 08854, USA
2
Pharmacology and Physiology, NJ Medical School, Newark, NJ 07103, USA
*
Author to whom correspondence should be addressed.
†
Retired.
Healthcare
2019, 7(4), 114;
https://doi.org/10.3390/healthcare7040114
Meanwhile Chalder was one of the co authors of that FND is a Feminist Issue paper and not one of them bothered to reply to the relatively simple questions I asked, including about why there was no patient representation in the FND Subtypes paper. Fast forward to now and I am particularly interested to note that, according to AI, it was Profs Staab and Stone – two of the main architects of the ‘human construct’ that is PPPD (persistent postural-perceptual dizziness) about which there are still many controversies (some of which are listed in the FND Health Unlocked Hub and include that patients didn’t like or use the terminology and felt that changing it could, potentially improve outcomes) – who seem to have taken the decision to exclude patients in the Subtypes paper which some observers consider to be ‘appalling contempt’ on their part. However I prefer to get my information from humans so may drop Jon Stone a note/question about who took that decision via his feedback button on his self help FND site. Not that he bothered to publish or respond to the last feedback I gave him about people with rare conditions being initially misdiagnosed with FND even though it gave him the chance to bust a myth about FND. IE that questioning the FND diagnosis proves that it’s the right diagnosis.
David, as ever, thank you for calling out these poor quality papers and their authors. With any luck there will be a meeting to discuss the many controversies about PPPD in the UK later this year and hopefully I’ll be there and be permitted to speak about the biggest elephant in the room which is the territorial expansion commentary from Kanaan that accompanied the FND Subtypes paper (the most interesting part is, as is so often the case, behind a paywall). If I can figure out a way to stop my bank from locking my card (which it tends to do if I make payments anywhere outside the UK) I hope to be able to donate to your crowdfunder again and will certainly post the link in the FND Hub I’m in.