Trial By Error: Professor Chalder Downgrades Definition of “Recovery”

By David Tuller, DrPH

President Trump’s words and actions are routinely mind-boggling but never surprising, given past experience. The same is true of papers co-authored by Trudie Chalder, King’s College London’s mathematically and factually challenged professor of cognitive behavior therapy. In a recent article, she holds true to form. 

In “Recovery from chronic fatigue syndrome: a reflexive thematic analysis of experiences of people before, during and after treatment,” Professor Chalder and two colleagues blatantly mischaracterize the 2021 guideline on ME/CFS from the UK’s National Institute for Health and Care Excellence (NICE). The paper, published in December by the International Journal of Qualitative Studies on Health and Well-being, is an analysis of interviews from 19 people diagnosed with chronic fatigue syndrome (CFS) and receiving cognitive behavior therapy (CBT).

All were recruited through a specialized clinic for persistent physical symptoms (PPS). The participants met one of two outdated case definitions for CFS–the 1991 Oxford criteria and the 1994 Fukuda criteria from the US Centers for Disease Control and Prevention. Neither of these case definitions requires post-exertional malaise, recognized in more recent criteria as the central characteristic of the illness. Participants were invited to join the study “following a biopsychosocial assessment conducted by psychiatrists with expertise in CFS.” (Presumably, the psychiatrists assessed the participants as biopsychosocially acceptable, whatever that might mean.)

The paper focuses on the subjects’ varying views of “recovery,” and how those views relate to the stages of the treatment process. However, it introduces the issue with a flagrant misrepresentation:

“Cognitive Behavioural Therapy (CBT) is currently the only treatment recommended by The National Institute for Health and Care Excellence (NICE), which provides guidance on healthcare treatment in the UK. This treatment is underpinned by a biopsychosocial, illness model of fear avoidance which proposes that initial fatigue symptomology is triggered by a viral infection or stressful event and that a subsequent combination of cognitive responses (e.g. fear of engaging in activity) and behavioural responses (e.g. activity avoidance) interact with physiological processes to perpetuate symptoms. The aim of treatment is to establish a regular rest and sleep pattern, gradually increase physical and mental activity, and to challenge unhelpful beliefs about symptoms and activity, including fears about symptoms or activity. Evidence suggests that CBT improves symptoms such as fatigue and physical functioning with one trial reporting a recovery rate of 22%. However, NICE guidelines suggest that CBT should be used to manage symptoms, improve functioning, and reduce the distress associated with having a chronic illness, rather than being seen as a ‘curative’ treatment.”

This passage is breathtakingly dishonest. NICE did not recommend CBT as a “treatment” for ME/CFS—especially CBT based on the “biopsychosocial illness model” and on the assertion that “unhelpful beliefs” and “fear of engaging in activity” are among the main causal factors generating symptoms. On the contrary, NICE explicitly disavowed its previous recommendation of precisely the form of CBT described by Professor Chalder and her colleagues. The implication that NICE has endorsed their approach is unequivocally untrue.

Regarding the passage’s claim that “evidence suggests that CBT improves symptoms,” NICE found that the evidence in favor of CBT in this context was of “very low” or merely “low” quality. That negative assessment included the data from the fraudulent PACE trial—the source of the purported 22% “recovery rate” mentioned in the passage. Not surprisingly, the article doesn’t explain that the PACE trial yielded those results only after Professor Chalder and her co-authors dramatically weakened all four metrics for assessing “recovery.” It also doesn’t mention that a reanalysis of raw PACE trial data per the outcomes as promised in the protocol found much lower “recovery” rates and no statistically significant differences between the intervention and comparison groups. (I was a co-author of the reanalysis.)

Professor Chalder and her colleagues acknowledge in the paragraph’s second-to-last sentence that their previous description of CBT is not, as they have led readers to believe, the version that NICE has recommended–and that the NICE recommendation is not for “treatment” of the underlying condition but for supportive care only. This bait-and-switch might not be apparent to those unfamiliar with Professor Chandler’s history of inaccurate and laughable assertions.

The paragraph ends with this line: “A lack of precise treatment recommendations may contribute to distrust and dissatisfaction amongst patient groups.” This statement misattributes the likely source of much patient “distrust and dissatisfaction”—the fact that Professor Chalder and her colleagues publish bogus research like the PACE trial and, despite having been exposed for their shenanigans years ago, continue to try to convince people that their findings are robust. 

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Downgrading the definition of “recovery”

Beyond that core issue, what strikes me most from the analysis is that Professor Chalder and her colleagues appear to be downgrading what they mean by “recovery” from ME/CFS. Patients generally want, and hope for, an absence of symptoms and a return to normal life—what is often referred to as “clinical recovery.” The paper reports that, in contrast, those who say they have “recovered” later in treatment tend to be referring to what is called “personal recovery”—a sense of having found meaning and hope while managing to cope with chronic illness. Per the discussion: 

“Recovery is a blend of ‘clinical recovery’, ‘personal recovery’ and ‘illness management’ models…Data suggests that concepts can change, and treatment may result in patients adopting views more in line with ‘personal recovery’ and ‘illness management’ models. These more flexible definitions, particularly those comprising changes to pre-illness beliefs and behaviours, new roles, acceptance and strategies to manage symptoms, corresponded with greater hope…Those participants who held predominantly ‘clinical’ definitions of recovery, involving total symptom remission and restoring what is lost without change, generally had lower hope for recovery.” 

In other words, patients generally learn to adapt to their illness by accommodating their lives to its demands and constraints–except, it seems, for those unfortunate or misguided souls who stubbornly cling to their “‘clinical’ definitions of recovery.” The idea seems to be that CBT, if it works at all, does so largely by promoting a reframing of people’s expectations and experiences rather than by generating objective improvements in their physical condition. Given that, claims of “recovery” in the ME/CFS literature presumably rely less on actual reduction of symptoms and more on changes in how patients feel about, describe and “manage” them. 

In my experience, many patients with ME/CFS and Long COVID end up over time adopting a perspective resembling this sort of “personal recovery,” even without CBT. They learn to live with the illness within their capabilities and, to a degree, stop hoping for elusive medical cures. So that’s what Professor Chalder and members of her cabal have meant all these years when they have promised patients that interventions like CBT and graded exercise therapy offer a pathway to “recovery”? Good to know, after so much time.

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