From Fatigue: Biomedicine, Health & Behavior, 7 July 2016.
Cognitive-behavior therapy: why is it so vilified in the chronic fatigue syndrome community?
Department of Psychiatry, Stony Brook University Health Sciences Center, Stony Brook, NY, USA
Cognitive-behavior therapy (CBT) is a well-established psychosocial intervention for psychiatric disorders, pain management, and stress related to medical conditions. 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, 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  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  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. 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. 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.
CBT-based graded activity and non-improvement
The central behavioral principle of CBT in CFS is to assign patients a physical activity, usually walking, that is initiated at a very low level, say 5 min a day of low-effort walking, in order to build the patient’s endurance for gradually increased walk durations over several weeks to months. The protocol also includes healthy sleep scheduling and challenging of unhelpful beliefs. About 4/10 subjects achieve clinically relevant improvements with this approach. That is a notable finding, but it still leaves roughly ½ of CFS patients reporting unchanged or even worsened illness in behavioral intervention trials.[2,3] Given the considerable publicity on how effective CBT is for CFS, the backlash from patients not helped by this approach is understandable.
Furthermore, a number of patient surveys have documented negative effects of a CBT-type approach. A recent review  of eight surveys of CFS patient samples (Ntotal = 6146) found high percentages (roughly 50%) of adverse reactions, relapses, and illness worsening as a result of patient-initiated or practitioner-prescribed graded activities similar to presumably therapeutic behavioral techniques. Thus, there is a considerable gap between successful CBT research trials and patients’ real-life experiences using CBT techniques either self-initiated or prescribed by a practitioner.
CBT outcomes: the issue of recovery
According to the Medline Plus Merriam-Webster Medical Dictionary, recovery is defined as ‘the act of regaining or returning toward a normal healthy state.’ The PACE trial reported a recovery rate of 22–23% in the active behavioral intervention conditions similar to a previous intervention study in CFS. Recovery was defined at follow-up assessments by fatigue and physical function scores on standard self-report instruments that fall within broad population norms. Although such recovery criteria appear reasonable, a closer look reveals a number of concerning issues. First of all, population norms may not capture full restoration of health. In this instance, ‘recovery’ indicated recovery from the current episode, rather than sustained recovery. ‘Remission,’ which refers to current status, rather than a state of sustained recovery is a more accurate term – which the PACE authors appear to agree with. This term is less prone to misinterpretation and exaggeration.
Furthermore, published CBT studies do not include patients’ perceptions of their recovery status as compared to their pre-morbid functioning, which could provide important context for the extent of recovery. For instance, a recovered individual, defined by physical functioning scores at follow-up assessments only, may be misleading if the patient’s pre-treatment function was similar or even superior to his or her post-treatment status. Actually, post-treatment physical function scores (Short Form-36 Physical Function subscale) in the PACE trial that fell within their recovery-defined normative range included, at the lower end of the range, multiple physical limitations that overlapped with trial entry criteria scores for significant disability. It is quite dubious to characterize such an outcome as ‘recovery.’ These points have been expressed in letters to the editor that dispute recovery-labeled outcomes in published behavioral intervention studies in CFS.[4,14]
Finally, the majority of CBT studies relied on patient self-report and did not utilize more objective measures of recovery, such as return to work or school  or laboratory-based assessments (e.g. 6-min walk test). Thus, an important level of confirmatory assessment was not done. Given these limitations in evaluating recovery, a plausible argument can be made that recovery claims are, at minimum, inflated – a claim that many patient advocates would vigorously endorse.
Alternatively, a more modest interpretation of ‘recovery’ might characterize such outcomes as successful adaptation of illness-related behavior and attitudes to ongoing but diminished illness. Whiting et al.  in her review of behavioral intervention studies in CFS presented the logical possibility that patients’ perceptions of improvement could be due to lowered expectations of their abilities, rather than objectively heightened functioning that might be expected from a treatment protocol that encourages increasing activity levels. There is some evidence to support this interpretation.
Of the three successful CBT trials that utilized more objective actigraphy-based physical activity outcomes, none found improvements in actigraphy from pre- to post-treatment or between intervention and control groups. One plausible interpretation of this finding is that ‘recovered’ individuals may have replaced illness-exacerbating activities with illness-moderating behaviors, resulting in no net increase in total activity levels. As suggested in illness management-oriented trials in CFS, patients may still be living within a safety ‘envelope’ that avoids prolonged post-exertional symptom flare-ups, rather than enjoying resilient levels of recovered function and symptom alleviation. Such a management strategy could still lead to substantive improvements in fatigue and function. But this type of outcome would seem to be more consistent with a hypothesis of successful adaptation in combination with varying levels of improved functioning rather than full recovery.
Finally, it is important to recognize that a recovery rate below 25% as reported in the PACE trial and other CBT studies with similar outcome criteria, even if accepted as a full or nearly full restoration of health (a questionable assumption), still leaves the vast majority of these patients with significant symptoms and impairments. Yet the publicity generated by highlighting recovery outcomes in CFS far exceeds the relatively modest results found for most patients in published behavioral intervention research. This is a vexing and frustrating issue for CFS patients who may be directed by practitioners and others to undergo CBT as an apparently curative treatment.
Without the disease-denying rhetoric and exaggerated claims regarding recovery that have been linked to this illness, perhaps CBT would not have the bad reputation it has among many in the CFS community. That said, many patients do not care about the type of intervention as long as it helps them. Yet patient reaction particularly among activists has thoroughly rejected the utility of CBT. Perhaps a new approach to educating providers (and influential medical practice organizations) is needed in this divisive environment. According to a recent qualitative study  carried out with 19 CFS patients, factors that influence whether or not a patient engages with a behavioral intervention for CFS are: ensuring that the patient feels ‘accepted and believed’; that the patient accepts the diagnosis; and that the model of treatment offered matches the model of illness held by the patient. This is the kind of thoughtful, data-based approach that should be considered when educating practitioners about how to help the CFS patient.
The International Association for CFS/ME (IACFS/ME*) Primer for Clinical Practitioners  approximates this more individualized approach to behavioral management with the patient and avoids the use of the CBT term given its negative connotations. With this more enlightened approach, we can do a better job of educating physicians and other practitioners on how to most effectively help CFS patients, rather than alienate them. For the practitioner interested in acquiring clinical skills for care of the CFS patient, professional workshops will be presented at the October 2016 IACFS/ME research and clinical conference (www.iacfsme.org). Finally, an ongoing effort at the Centers for Disease Control  to develop CFS education materials, including behavioral management suggestions, is now underway with the goal of providing guidance for both practitioners and patients.
*IACFS/ME is the sponsoring society for this journal.
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