The Duplicity of the Biopsychosocial School
Short essay about how the narratives biopsychosocial researchers into ME/CFS pushed publicly diverged from the narratives they pushed to the medical community, governments, and insurers and how that gap harmed ME advocates’ ability to communicate their own narrative.
The monstrous harms done by the biopsychosocial (BPS) school to people with ME/CFS are starting to get the exposure they deserve, but their duplicity over decades has gotten less acknowledgement.
For decades, BPS researchers privately drove a campaign to cast ME as modern-day hysteria, lobbying the medical community, insurers, and governments to treat it as a psychosomatic illness and give psychologists control over its treatment.
But in public, they cloaked their heinous, nakedly unscientific views with deliberately vague, genially expressed bromides about the importance of treating both body and mind. Bromides that shifted the terms of the debate from disagreement about its nature and etiology to a philosophical disagreement about mental health in which BPS researchers were positioned as champions of an enlightened future and pts as backward facing zealots.
They bolstered this narrative with expansive, oft-repeated claims of having been victimized by a radical mob of violent pt activists. Often invoking threats of physical violence that, to the extent they occurred, were rare or unsubstantiated. Claims that they bundled together with clearly not abusive behaviors they personally considered “vexatious,” such as filing FOIA requests about their work or asking pointed questions of them at conferences.
These narratives set ME advocates on the back foot, forcing them to disavow those marginalizing characterizations before they could engage substantively and muddying the waters to such a degree that attempting to respond was akin to wrestling smoke.
This 1996 ITV interview with Simon Wessely is typical in its trickery and his affability:
“Many patients have their illnesses triggered by a virus, but in terms of long term disability, are psychological factors important? Well, of course they are. In most illnesses they are. And they’re particularly important in this area. It would be an odd world if they weren’t. They need to be addressed with equal seriousness to physical factors.”
Peter White is less artful in this early 90s interview on British talkshow Kilroy.
White: “No psychiatrist I know thinks that this is a purely psychological disorder and is all in the mind.”
Kilroy: “How much then? If not purely in the mind. How much in the mind?”
White: “I don’t think it is all in the mind. Indeed I don’t think any mental illness is all in the mind I’ll go that far.”
This circa 2011 BBC radio interview w Simon Wessely and Charles Shepard shows how they used claims of violence as a cudgel, how they portrayed resistance to their agenda as the product of an irrational hatred of mental disorders and how all that circumscribed ME advocates’ ability to respond.
Wessely: “I’ve been the target of threats of violence. Because of that we’ve taken security advice and police advice.”
Interviewer: “What motivates these attacks?”
Wessely: “. . . some of the motivation [comes from people who believe] any connection to psychiatry . . . is tantamount to saying, ‘There is nothing wrong with you. You are making this up. You’re not really ill.’”
And in another exchange shortly later:
Interviewer: “people seem to [think] you’re in a big conspiracy to pretend they’re all malingering.”
Wessely: “Certainly . . . [Patients seem to feel], ‘I would rather have an incurable virus than a potentially curable disorder, if the cure or treatment involved any acknowledgement of the social or psychological.’”
But what they were saying in their literature and publications was starkly at odds with the blandly pro-mental health narratives they deployed publicly.
Their model was simple. Pts had learned to interpret normal bodily sensations as pathological, began to avoid activity, became deconditioned, and fell into a spiral of ever worsening deconditioning. To be cured, they just needed to accept that the symptoms reflected no actual pathologies and could be safely ignored. That with right thinking and exercise, they would be cured.
Anything that impeded this process, from diagnostic investigation, familial support, and disability benefits to biomedical research and news coverage of the disease was dangerous and could prevent recovery. Doctors should even lie to pts about their views to facilitate recovery.
Here’s a selection of quotes from Simon Wessely, the chief architect of this campaign.
“Sufferers from mysterious conditions that lie outside conventional medical practice no longer consider themselves to be oppressed by spirits and demons but by mystery gases, toxins and viruses. This is particularly visible in the changing nature of mass hysteria.” 1993
“. . . the only determinant of outcome in this condition [CFS] is strength of belief in a solely physical cause. . . .” 1993
“Cognitive therapy helps the [CFS] patient understand how genuine symptoms arise from the frequent combination of physical inactivity and depression, rather than continuing infection, while a behavioural approach enables the treatment of avoidance behaviour and a gradual return to normal physical activity.” 1989
“. . . improvement only requires a shift in the patient’s view on the relative merits of rest and exercise.” 1999
“Labelling physical symptoms as an illness carries the risk of the symptoms becoming self-validating and self-reinforcing, often promoted by the Internet, support groups, self-help literature and mass media.” 2006
“. . . the interventions of professional carers may perpetuate disability by teaching patients to attribute impairment to pain.” 1990
“As regards benefits:- it is important to avoid anything that suggests that disability is permanent, progressive, or unchanging. Benefits can often make patients worse.” 1993
“Given the clear ethical imperative against lying, what can be left? I suggest the solution is to say little. Is it imperative that the patient be told their illness is truly “all in the mind”? I suspect not.” 1999
They knew their theories were unscientific and unpalatable. So they encouraged doctors to mislead patients, they misled the rest of us about what they actually believed, and they tarred one of the most desperately ill patient populations as irrational and dangerous to forestall scrutiny. That mendacity, that depravity was critical to their success. That we’re still talking about their ludicrous beliefs in 2024 isn’t because they’re persuasive or strongly evidenced, but because BPS proponents were willing to exploit our good faith to push them. And also because (in topics that deserve more attention) 1) their model facilitated governmental and corporate cost cutting and 2) flaws in how medicine, the media, and public consider issues like these meant that nobody asked questions.
For more on the origins and harms of their model, please read George Monbiot’s recent article: https://amp.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services
For more on the supposed “harassment” campaign, check out David Tuller’s dogged reporting. This gives a good summary: https://virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/
For more on the broader factors at play, check out Twitter user @HealthHubris’ discussion of how the BPS model and its proponents’ collusion with UK’s DWP and insurers facilitated their drives to cut costs: https://www.healthcarehubris.com/post/summary-structural-dimensions-of-the-biopsychosocial-model
