From Fatigue: Biomedicine, Health & Behavior, 7 July 2016.
EDITORIAL
Cognitive-behavior therapy: why is it so vilified in the chronic fatigue syndrome community?
Fred Freidberg
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.[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.
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.[8] The protocol also includes healthy sleep scheduling and challenging of unhelpful beliefs. About 4/10 subjects achieve clinically relevant improvements with this approach.[2] 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 [9] 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.’[10] The PACE trial reported a recovery rate of 22–23% in the active behavioral intervention conditions similar to a previous intervention study in CFS.[11] 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.[12] 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.[13] 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 [15] 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.[15] Whiting et al. [16] 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,[17] 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.[18] 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,[19] 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.
Conclusions
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 [20] 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 [21] 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 [22] 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.
References
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14. Agardy S. Letter to the editor: Comments on ‘recovery’ from chronic fatigue syndrome after treatments given in the PACE trial. Psychol Med. 2013;43(8):1790–1791. doi: 10.1017/S003329171300113X [CrossRef], [PubMed], [Web of Science ®]
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OK, all behavioural therapy needs application and accompanying attitude. Fair enough. Diets, weight training whatever. But you don’t go on a diet to put on the muscle. It is the WRONG therapy.
We need proper exclusion diagnosis and attempts at appropriate treatment . We are still dogged by pre-assumption of false illness belief, pre-assumption of health hysteria etc. creating “neurofunctional” symptoms where there should be none, and all this on the basis of the poor diagnostic approaches which FIB doctrine itself engenders.. (“Don’t find any illness as they will hang on to it”). Medicine betrayed, patients be b..d.
CBT/GET is imo a ruse therapy, with a nod to deconditioning, but essentially about relieving neurofunctional symptoms by targeted CBT, with “acceptability” to the patient no small part of hoped for effect – you will be more relaxed, more hopeful and more responsive if you believe because psychological anxiety, though we weill not emphasise this, is creating a lot of your symptoms” All fine and well for that type of patient, but those of us who do not fit this model are currently being sacrificed for the sake of those who do. Obfuscation/word play reigns because it has to reign for those patients who are driven primarily by sympathetic overdrive, requiring grounding and the best form of grounding is whatever psychobehavioural therapy suits them. The rest of us can take a “hike”, while their therapies are talked up to secure maximum response.
I could name at least four therapies besides CBT/GET – all different and all tending to shy away from the psychotherapy label as that is less acceptable to patients. They all in some way deal with neurofunctional issues based on sympathetic overdrive. In some cases they have apparently worked. They are however privately offered and are not setting the tone for a pan NHS approach as is CBT/GET.
Does this article help? Failure to distinguish CBT from behaviourl therapy i.e. GET and the conclusion give it all away.
“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”
The article itself mentions “behavioural interventions” i.e one assumes GET. It is concerned about “disease denying” But GET in itself does not deny disease unless it is a therapeutic ruse. GET asserts one particular aetiology – deconditioning. It is a therapy for exercise avoidance and deconditioning. It asserts deconditioning as a physcial cause. In what way is this attribution disease denying? A logical understanding would not be that GET denies our disease/s, but that it simply misunderstands it/them and via poor diagnostic practice is treating people who do not have deconditioning. It is in short the wrong biomedical therapy for very many of us . So why the concern about “disease denying” – because in their heart of hearts they know that GET is part of a disease denying or at least psychologising ruse suitable for some patienst who must not be told the truth (clinically understandable) but damaging to the interstes of other “activists?????” whose real needs are being ignored in order not to disturb the possible responders. Again several of the privately available psychobehavioural therapies shut down debate as it is in the interests of neither their systems nor their patient-responders, while unfairly claiming to understand and resolve ME, if only the sufferer is accepting/dedicated enough.
“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”.
Can this “education” be pushed any further? We already have “yes, we do believe you are ill, it’s “functional”, you are deconditioned and over worried about your health, and it is giving you physical symptoms, which we do not deny. This is our diagnosis.”. We have had that for years, and kind sympathetic attitudes , but “I’m sorry but we do not feel you are suitable” rather than “go to someone else” does not improve the situation and paucity of treatment options or lack of knowledge/understanding among professionals etc.
So what is the article all about? Why is the issue of matching “models” so important? Surely of equal importance is whether the model matches the organic illness? Why is this central issue ignored? Because we have a “false illness belief”.
In reality, this obfuscating piece is a promotion of old attitudes of False illness belief, which render debate about organic nature of the illness/es and doing actual medicine irrelevant. They don’t need to check if their model matches the patients illness (rather than attitude to their illness) if they have decided the illness is FIB/hysteria in the first place.
Efforts have of course been going on for years to “educate” one and all (including therapists but especially “activists”) by obfuscation, playing with terms like “real”, “mental”, “prejudice against mental illness” – all the Science Media Centre guff. Perhaps when facing a CBT/GET reluctant patient, he/she should be accused of “contempt for mental illness”. That is the accusation that has been aimed at us in general , so why not try it on a patient?
The impression remains that GET is part of one big psychosocial ruse to rescue people from either false illness belief and/or symptoms caused by health anxiety, with exercise as an essential “feel the fear and do it anyway” essentially psychological therapy.. GET is there not to cure deconditioning but to accompany CBT which in turn is there to deal with false belief. GET is also there as measure of cure (it shows the therapy is pretty ineffective) buts an in essence psychological “feel the fear and do it” therapy.
Thus they go on presenting GET as appropriate for physical illness to get/keep the patient “on side” and show themselves to be open to physical issues, while really remaining psychologisers and keeping patient’s attitude paramount.
It’s the saem old story and either a thoroughly a disingenuous piece or one whose authors have failed to examine their own presuppositions before putting pen to paper.
I have long thought that GET might address the same issues as Gupta/Reverse/Mickel/Lightning etc.etc., in GET’s case as a sort of gradual exposure therapy calming down the sympathetic overdrive and the ensuing neurological dysregulation hypothesised by these treatments, though of course it just doesn’t work for large numbers of us. Is this what you’re saying, splumper? I’m sorry I’m too cognitively screwed to properly digest what you’re saying.
More or less, yes.
I wonder why a Psychologist with an’ illness belief’ (as he describes it) is unable to cure his own illness belief??
Does he suffer, as we all do, from confusion from time to time?
A Psychologist suffering from years of illness belief and confusion is a scary thought for his patients.
I think he’s missing the point, which is that ME is a Neurological disease, with an abundance of research evidence to show exactly that and not ‘all in the mind’. Perhaps when he realises this, it will help him to find a cure for us all.
Lightening has already been challenged for it’s artificial claims of recovery by the Advertising Standards Authority. The MEA reported them and the complaint was upheld.
And I also mean the kind of sympathetic overdrive based substantially on neurofunctional changes which can be addressed by the type of things you mention. I think some patients are like this, but many are not. Not e.g. Perrin’s back problems.
PS Can I ask how many people have been referred to a CFS clinic and after talking to a nurse/sister for only an hour, was then told she would ask my GP to prescribe anti depressants?
When I said, “I’m not depressed”, she said, ” well just in case, for the future”
On refusing this, I was promptly discharged with an excuse for no funding for me to attend there!
She has now gone on to open her private ‘Therapy Clinic’ and has just been praised for extending it as entrepreneurial. Not the first nurse to do this, after being in a CFS Clinic.
As we are told many more children are suffering from depression, are there any stats to show this practise of putting CFS patients straight onto anti depressants without a full and proper assessment please?
Why is CBT so vilified in the ‘cfs’ patient community?! Um … because it doesn’t work.
Well said Jackie. Concise and correct as Fred has said.
Seriously given the heart rate abnormalities and temperature abnormalities found in people with ME/CFS why are they NOT being recorded, quantified and exercise/exertion assessments carried out. Daily heart rate traces, orthostatic rate, heart rate variability…..a serious under use of objective science to move the management of ME/CFS forward. Do any researchers actually measure physiological changes in patients??? Why is the ME Association silent on this???? NICE ignore patients physiological abnormalities but why aren’t patients being advised that some patients are benefiting from doing the NASA lean test (Bateman Horne website) wearing continuous heart rate monitors and staying under their anaerobic threshold and keeping their HR within 10% of resting heart rate when resting???