Journal editorial by Dr Fred Freidberg, 7 July 2016:

Cognitive-behavior therapy (CBT) is a well-established psychosocial intervention for psychiatric disorders, pain management, and stress related to medical conditions.[1] It has rarely provoked controversy, much less outright hostility. That is, until it was applied with apparent success to the illness of chronic fatigue syndrome (CFS) in a number of published intervention trials over the past two decades.[2,3]

In the CFS patient (and professional) communities, perhaps the strongest negative reaction to CBT occurred in response to the 2011 Lancet-published PACE trial,[3] the largest randomized trial (N = 641) of CBT (and graded exercise therapy) for CFS.

Letters to the editor and numerous blog comments criticized the highly publicized PACE trial over concerns about generalizability of the findings, protocol changes during the trial that favored recovery outcomes, and more recently Lancet’s refusal to share data from the study. Furthermore, CFS researchers and other scientists posted an open letter [4] to the Lancet editor questioning the PACE trial with respect to its recovery criteria, failure to report data on objective outcomes, and conflict of interest concerns.

Regarding the use of CBT in the PACE trial, David Tuller, a UC Berkeley lecturer on public health and journalism, wrote in a recent post on an academic blog [5] that people with CFS ‘bristled with offense at the suggestion they would get better if only they could change their perceptions about their condition.’ And ‘pushing themselves to be more active not only wasn’t helpful, they insisted, but could trigger a serious and extended relapse.’

This editorial examines the possible factors that have led to the rejection of CBT by many patients and professionals with an interest in CFS and offers some initial thoughts about what might be done to better educate practitioners to help these underserved patients, particularly when delivering behaviorally oriented management advice.

CBT and illness beliefs in CFS

A number of psychological studies have examined the role of illness beliefs as a potential persistence factor in prolonged fatigue states, including CFS.[6] Certain beliefs have been postulated to predict poor outcomes, in particular ascribing the illness to a physical or somatic cause (given the lack of consistent medical findings or an objective test for diagnosis). Yet CBT studies in CFS have not confirmed the hypothesis that somatic attributions predict poor outcomes.[6]

In one of the first published controlled CBT trials in CFS, it was concluded that: ‘Physical illness attributions were widespread, did not change with treatment, and were not associated with poor outcome in either the cognitive-behavior therapy group or the control group.’[7, p. 77] However, the implicit message to patients continues to be that attributing the illness to a physical cause is an error that needs to be corrected.

As a result, patients may believe that practitioners of CBT will try to convince them that their personal beliefs maintain their illness and minimize any role for (a more legitimizing) biomedical pathology. However, one may view the etiology of CFS, if the data do not support the utility of trying to convince patients they are not physically ill, then it would seem to be counterproductive to take such an approach.

Cognitive-behavior therapy: why is it so vilified in the chronic fatigue syndrome community? by Fred Friedberg in Fatigue: Biomedicine, Health & Behavior Volume 4, Issue 3, 2016

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