Trial By Error: Oxford Scholars Blame Biomedical Research Hegemony for Fibromyalgia “Chronicity Rhetoric”

By David Tuller, DrPH

Social Science & Medicine (SSM) is a prominent interdisciplinary journal that publishes social science research related to health. A recently published SSM paper is called “Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care.” Part of a larger, multi-partner, Oxford-based project called Patient-centred Care for Fibromyalgia: New pathway Design, or PACFiND, the new paper is based on 59 interviews with health care providers as well as field notes from observation of service provision. The providers interviewed are from a range of specialties, but they share one characteristic: They offer services and interventions categorized as “biopsychosocial.”

In this context, “biopsychosocial” includes not just standard psycho-behavioral treatments like cognitive behavior therapy (CBT) and graded exercise therapy (GET)—the treatments recommended in the fraudulent PACE trial for ME/CFS–but also so-called “mind-body” programs. These approaches tend to toss together, in various combinations, elements of meditation, relaxation exercises, positive affirmations, neurolinguistics programming, cognitive behavior therapy, health coaching, and other modalities. Well-known examples include programs like the Lightning Process, the Gupta Program, Dynamic Neural Retraining System, and the Chrysalis Effect, the latter mentioned specifically in the paper.

The three main authors are from Oxford University; the corresponding author is a health services researcher and the senior author is a medical sociologist. (Perhaps they are colleagues of Professor Michael Sharpe, lead PACE investigator and Oxford’s self-styled “harassment” victim?) They reveal their view of the insidious nature of “chronicity rhetoric” from the start. “We focus on representations of fibromyalgia as a ‘chronic condition,’ which infiltrate and disrupt healing work,” the paper declares.  

Basically, the argument goes something like this: Any approach to fibromyalgia focused on biopsychosocial “healing” is good. The rigid evidentiary demands of biomedical research’s “hegemonic position” disadvantage biopsychosocial healers, who are unfairly barred from making claims about “recovery” based solely on anecdotal accounts. Advocacy organizations are grifters who hype the “chronicity rhetoric” for fundraising purposes. The welfare benefits system further reinforces the need for fibromyalgia to be constructed as “chronic.” And so on.

This is the premise grounding the paper:

“New service models for people with fibromyalgia recognise that people are complex and integrated body-minds that are responsive to, and interactive with, their social/material environments. In other words, “everyone’s disease is the product of the individual history of exposures [including a wide range of psychosocial stressors], superimposed on their underlying genetic susceptibilities”. Psychosocial pressures get “under the skin” and need addressing to mitigate symptoms. Neurobiological concepts of Central Sensitisation and Central Sensitivity Syndrome (CSS) are important to such models, providing mechanistic explanations of fibromyalgia, and opportunities for treatments that involve desensitising (or “dampening down”) a person’s nervous system.”

Note the presumption here that any new service model presenting itself as holistic or involving “body-minds” should essentially be accepted as valid and legitimate. The same goes for the “neurobiological concepts” that offer “mechanistic explanations” and “opportunities for treatment.” The paper includes no discussion of actual evidence for these theoretical constructs and the interventions based on them beyond the pronouncements and opinions of the interviewees.

Qualitative research fulfills important functions, but being able to reach definitive conclusions about the effectiveness of interventions is not among them. So it seems rash for the authors to take at face value that whatever someone might frame as biopsychosocial “healing work” is in fact “healing work.” They have no credible grounds for making broad judgments about whether “healing work” is taking place.

All they can do repeat is anecdotal accounts. While interesting and informative, such accounts do not constitute proof of effectiveness. And in this paper, the anecdotal accounts are from biopsychosocial healers, who have an obvious interest in framing their work as successful.

Which brings us to the Chrysalis Effect.

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Advertising regulators ban Chrysalis Effect “recovery” claims

In the paper, the authors write:

“A major obstacle faced by practitioners working in biopsychosocial services is that they lack established, ‘evidence-based’ ways of demonstrating that they work (as established through gold standard clinical trials)…We illustrate how the hegemonic position of EBM [evidence-based medicine] within Biomedical Research helps to construct fibromyalgia as a chronic condition with detrimental consequences for new service development.”

From this viewpoint, the issue is not that fibromyalgia is—in reality–a chronic condition. The issue is that this perception of fibromyalgia is, I guess, a sort of illusion, even a deception, since the disease is only “constructed” as a chronic condition by larger outside forces. (Reminds me of the famous line spoken by the voluptuously illustrated cartoon character Jessica Rabbit, the wife of the eponymous character in the 1988 comedy “Who Framed Roger Rabbit”: “I’m not bad, I’m just drawn that way.”)

The paper’s example involves the Chrysalis Effect, a mind-body intervention with a history of making extravagant boasts about “recovery” from complex illnesses like fibromyalgia and ME/CFS. As a result, the UK ME Association complained to the Advertising Standards Authority (ASA), an independent regulatory body. In a 2023 decision, the ASA barred the Chrysalis Effect and its practitioners from repeating such statements.

The paper’s stance is that clinical trials are not appropriate for assessing the benefits of biopsychosocial treatments. And the authors appear to blame the lack of documented benefit in such trials on deficiencies in the patients, not the interventions. As they write:

“The ASA’s determination (that there was not enough trial evidence to support claims about recovery) is hooked into a dominant biomedical infrastructure, in which clinical trial evidence is the gold standard. Within these governing systems, biopsychosocial (and often locally-developed) services find it difficult to demonstrate benefit (i.e., that healing work works)…The benefits of supporting this kind of work through individualised and therapeutic coaching is difficult to prove. Clinical trials cannot account for, or control for, such diverse social challenges or the individual neurobiology that may be involved in addressing them. In practice, trials of biopsychosocial models of care may not demonstrate improved outcomes, not because the interventions (care practices) involved are unfounded (non-evidence-based), but because patients do not have the social or psychological resources to maximise benefit from them.”

I guess one could refer to the standard approach to evidence as biomedical hegemony. From my perspective, it’s just a matter of requesting some sort of convincing data to support assertions of “recovery” rather than hyping anything labeled as “biopsychosocial.”

The paper also includes a slam at advocacy organizations, including the ME Association, for adhering to the biomedical paradigm and its accompanying “chronicity rhetoric.” This position is framed as a big grift:

“In order to secure donations, patient charities and affiliated researchers emphasise that conditions such as fibromyalgia have no cure. Donations fund (almost exclusively) pharmaceutical research so that ‘one day we hope we might discover a diagnostic marker and effective treatments’ (The ME Association, 2024). It therefore makes sense for such organisations to assert that ‘getting better’ or ‘recovering’ from fibromyalgia is rare, and that chronicity is the more probable trajectory.”

Contrast that, I guess, with an approach designed to convince desperately ill people to pursue anything that promotes “recovery” and is called “holistic” or said to relate to “body-minds.” The ME Association issued a robust response to these accusations.

The paper makes similar points about the structures involved with the provision of welfare benefits. I have more sympathy for some of the concerns raised in this section. It is not a new complaint that disability programs can be so inflexible in their demands and requirements that they undermine genuine efforts by patients to return to work. In the US, for example, such restrictions have long been a problem for people with HIV/AIDS and other chronic illnesses on long-term disability.

So yes, there is a larger question about the best way to organize these systems. But that is very different from blaming the provision of benefits for generating purportedly harmful “chronicity rhetoric.”

Putting that aside, however, the major flaw in the paper’s entire argument is this–the true source of any “chronicity rhetoric” involving fibromyalgia is reality, not the coercive demands of biomedical research and the welfare benefits system. The investigators themselves note that “chronicity does accurately reflect the findings of published epidemiological research and the experience of many people with the condition.” Ok, then.

But that view, they continue, “is also challenged by practitioners and patients attempting to harness (new) understandings of neurobiology, with emancipatory goals of improvement and/or recovery…Practitioners and patients argue from practical experience that improvement and/or recovery are possible with the right support and individual resources to make changes.”

That might be. And who could possibly be opposed to “emancipatory goals of improvement and/or recovery”? But—luckily for the safety and well-being of the general public—such claims still generally require more convincing proof than glowing testimonials about “healing” on websites and in qualitative studies.