Trial By Error: PACE Authors Now Blame “Misunderstandings” for GET/CBT Criticisms

By David Tuller, DrPH

It is hard to know what to make of the news that a peer-reviewed journal has actually accepted a PACE-reunion paper from the three lead investigators, Professors Michael Sharpe, Trudie Chalder, and Peter White. Even more so for a paper titled–without irony, it seems–“Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis.” This surprising event occurred on October 1st, according to a notice on the website of King’s College London, Professor Chalder’s home base.

The full text has not yet been made available by the professors, as far as I can tell, and the Journal of General Internal Medicine hasn’t formally published the article yet.* {I have removed a sentence here. Details below.] So I can’t yet comment on the substance of the arguments they present to persuade readers at this late date that graded exercise therapy and their specialized version of cognitive behavior therapy are in fact “evidence based.” They definitely confront a tough challenge, since the UK’s most recent official assessment of PACE and related research has found the quality of the evidence for the main claims of effectiveness is either €œvery low” or merely €œlow.€ *[I added UK to this sentence. Explanation below.] This scathing assessment emerged from an authoritative source, the National Institute for Health and Care Excellence, the agency charged with developing clinical guidelines.

In their new paper, do the professors attempt to refute these NICE findings, and if so, how? Just by insisting that the assessment is wrong and re-affirming the soundness of their own research? Given their long-standing prominence, that strategy worked for many years to deflect, discredit and/or squelching legitimate criticism, most of it from patients. Perhaps this time the professors will provide a robust case, but judging from the abstract, they won’t.

Here’s the abstract:

Chronic fatigue syndrome (CFS), sometimes referred to as myalgic encephalomyelitis (ME) and often as CFS/ME, is an illness characterized by disabling fatigue and other symptoms, typically worsened by activity. The main evidence-based treatments are rehabilitative in nature and include specific types of cognitive behavior therapy (CBT), and graded exercise therapy (GET). In this article we briefly review the evidence for their safety and effectiveness and propose that much of the controversy about them arises from misunderstandings about their nature and delivery. In particular, we emphasize that successful rehabilitation from CFS/ME does not indicate that the illness is not real. We recommend that rehabilitative treatment always be preceded by a thorough clinical assessment and delivered by appropriately trained therapists working in close collaboration with the patient. We conclude that properly applied rehabilitative treatments offer the best hope of safely improving fatigue and function for patients with CFS/ME. However, we also recognize the need for more research into the treatment of this neglected condition, especially for those most severely disabled by it.


The abstract is revealing. First of all, note the decision to use CFS/ME throughout rather than acknowledge the term ME/CFS, which has been adopted by NICE and US agencies as well. This contrarian choice strikes me as petulant, defensive and unneccessary. Perhaps it represents the professors’ refusal to acknowledge that they have lost all control of the narrative–even naming rights to the disease. (To be clear, many patients dislike the composite names ME/CFS and CFS/ME, believe their continued use is harmful, and strongly prefer ME.)

Furthermore, it is inaccurate and unwarranted at this juncture to call GET and CBT €œevidence-based.€ It is true that there is more evidence about these treatments than any others. But the evidence does not demonstrates what the professors claim, as has been documented most recently by NICE. The Journal of General Internal Medicine should know better than to allow self-interested parties to mis-characterize the current status and stature of critical evidence in an article’s title and abstract.

It is also not the case that €œthe controversy about them [the interventions] arises from misunderstandings about their nature and delivery.€ The controversy revolves around the fact that, for decades, the highest levels of the academic and medical establishments accepted nonsense as if it were impeccable research, even though first-year epidemiology students at Berkeley have no trouble identifying disqualifying flaws. To pretend this is all due to some unfortunate miscommunications is ridiculous, a desperation move.

In another problematic statement, the professors note: €œIn particular, we emphasize that successful rehabilitation from CFS/ME does not indicate that the illness is not real.€ This declaration demonstrates their inability to respond to the actual objections about the methodological and ethical lapses that mar their research. They haven’t provided credible evidence that their interventions lead to €œsuccessful rehabilitation,€ so this statement is essentially meaningless. Moreover, the assurance that the condition is €œreal€ indicates that they continue to think patients object to the treatments mainly because of a prejudice against mental illness rather than because the research is bogus.

In short, this article appears to be an effort to massage the past and salvage reputations. The interventions were developed and presented as curative in nature based on the presumption that patients had no underlying pathology causing the prolonged symptoms. Instead, they were declared to be severely out of shape due to their unhelpful beliefs of having an organic disease that caused them to deteriorate after exertion.

Are these investigators still promoting this theory, which provided the rationale for their therapeutic approach? It doesn’t sound like it, although it’s hard to know from the abstract. Instead of acknowledging that clinical trials have failed to provide high-quality evidence supporting the theory and the interventions, they seem to be blaming other people for some €œmisunderstandings.” It is painful and sad to watch anyone engage in fruitless attempts to save face and escape public humiliation, much less eminent professors accustomed to being treated with deference and respect.


*I deleted the following sentence, which was obviously unnecessary: “(Perhaps more renowned journals were not interested?)”

*I added UK to the sentence to distinguish the NICE document from the recent draft of another evidence review commissioned by the US Centers for Disease Control and Prevention.

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