Here's part of the Friedberg article that strikes me as interesting (sorry, I don't know how to turn quotes pink):
'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.[
6Nijrolder I,
van der HorstH,
van der Windt D.Prognosis of fatigue: a systematic review. J Psychosom Res.2008;64(4):335–49. doi:10.1016/j.jpsychores.2007.11.001
[CrossRef],
[PubMed],
[Web of Science ®]] 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.[
6Nijrolder I,
van der HorstH,
van der Windt D.Prognosis of fatigue: a systematic review. J Psychosom Res.2008;64(4):335–49. doi:10.1016/j.jpsychores.2007.11.001
[CrossRef],
[PubMed],
[Web of Science ®]] 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.’[
7Deale A,
Chalder T,
Wessely S. Illness beliefs and treatment outcome in chronic fatigue syndrome. J Psychosom Res.1998;45(1):77–83. doi:10.1016/S0022-3999(98)00021-X
[CrossRef],
[PubMed],
[Web of Science ®], 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.'
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The above quote makes it clear that CBT does not change ME/CFS patients' beliefs in a physical cause, and CBT based on trying to change this belief does not work. In other words, what a patient believes doesn't effect the outcome. So far, so good. It's excellent that he points out that trying to change 'false illness beliefs' is ineffective.
However, he does not seem to go the next step and say this is because there are no 'false illness beliefs' because ME/CFS is a physical illness. I think this is what Professor Hooper is rightly pointing out. The treatment doesn't work because it's based on a false premise, not because it's not a good enough method or because beliefs don't influence outcome, but because we are actually physically ill.
I therefore think Prof. Hooper is right to criticise the paper on this basis, though perhaps he is unfair to damn it altogether. The paper does make lots of good points about the weaknesses of the PACE trial, and I'm certainly grateful for that.
Friedberg's conclusion includes:
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'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 [
20Chew-Graham C,
Brooks J,
Wearden A,
Dowrick C,
Peters S. Factors influencing engagement of patients in a novel intervention for CFS/ME: a qualitative study. Prim Health Care Res Dev. 2011;12(2):112–22. doi: 10.1017/S146342361000037X
[CrossRef],
[PubMed]] 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.'
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So it seems he is concluding that CBT still has a place in ME/CFS management so long as the practitioner and patient hold the same beliefs about the cause. Not sure where this gets us.
He implies that trying to change illness beliefs is ineffective, rather than wrong, and he still seems to think it is not known whether ME/CFS has a physical or psychological cause. That's where I can't agree with him.