“There‘s fair evidence CBT helps CFS/ME” - Discussion

As an ME patient, I feel compelled to challenge a remark made on Twitter that “there‘s fair evidence CBT helps CFS/ME”.

It is true that there is evidence that CBT enables a minority of chronically ‘fatigued' patients (e.g. defined by the Oxford CFS criteria) to report improved symptoms. However, after lengthy sessions of being instructed to reinterpret their symptoms, it is no surprise that some patients report a change in symptoms.

(CBT for CFS is based on the flawed and bizarre hypothesis that CFS is propagated by its symptoms. The hypothesis asserts that CFS patients have a false belief that their symptoms are indicative of physical illness. So CBT is designed to train CFS patients to reinterpret their symptoms as being non-pathological. Obviously, this undermines any patients who do have legitimate symptoms related to a biomedical illness, as it denies and invalidates their experiences.)

The PACE trial [1], the largest trial of CBT for CFS to date, demonstrated that 11-15% of CFS patients clinically respond to CBT. This is not a great result considering that it was an open label, inadequately controlled trial, and all of the primary outcomes (that were outlined in the trial protocol [2]) were dropped in favour of post-hoc criteria. (To this date, the primary outcomes defined in the PACE trial protocol have not been published, despite the data being reasonably requested by the CFS/ME patient community.)

CBT was said to have moderate efficacy at improving self-reported fatigue and self-reported disability in the PACE trial but, again, methodological weaknesses raise questions in relation to the robustness and validity of the published effect size.

Objectively measured disability [1], and objective employment data [3], did not significantly improve in the PACE trial after treatment with CBT.

In a large (n=1643) published study of specialist clinical settings in England, which failed to include any sort of control group, CBT was said to have moderate efficacy at improving self-report fatigue, however CBT failed to significantly improve (self-reported) physical disability [4]. As in the PACE trial, these results indicate that CBT has some success at changing interpretations of symptoms, but that it has no effect at improving the illness itself.

Considering that CBT is the only therapy that NICE recommends for CFS/ME, along with GET, CFS/ME patients are being offered very little, despite the exaggerated claims regularly made about CBT in relation to CFS/ME.

When using robust methodology (e.g. including an appropriate placebo control group) in trials testing CBT for CFS/ME patients, improvements are seen to evaporate, as demonstrated in a 2008/2009 Cochrane review: When the Cochrane review looked at trials that included a ‘waiting list’ control, it concluded that ‘[..] a non-significant difference in effect was shown for the CBT group when compared with the waiting list condition.' [5]

So, in other words CBT is no better than a waiting list control for CFS patients.

This is no surprise to the CFS/ME patient community.

The claim that CFS/ME patients should be able to think their way out of the illness, by reinterpreting physical symptoms and disability, is preposterous to anyone who has experienced the severely debilitating illness.

Such a claim would rightly be widely considered outrageous if it were made in relation to cancer patients, or multiple sclerosis patients, or HIV patients. Imagine the outrage if an NHS cancer specialist claimed that "cancer patients should be able to think themselves better by reinterpreting their symptoms". But apparently it's OK for clinicians to treat CFS/ME patients in this way. I suggest that this is because it is an invisible illness with no widely accepted biomarkers and no widely accepted effective biomedical treatment, so it's easy to accuse patients of being malingerers, and of faking, and of not having a real illness etc. In the 21st century, this is an unacceptable state of affairs. It's more like medieval medicine. lt's akin to the stories that we hear about in South Africa, in relation to HIV, whereby patients are told they will be cured if they change their life-style in a certain way. It's also repeating history, where other cohorts of patients have been accused of all sorts, and blamed for their own illness over the centuries. Such an attitude is reckless. and dangerously undermines the patients who may start to blame themselves when they inevitably find that CBT does not cure them, or improve their illness.

CFS/ME patients probably wouldn't so strongly object if CBT was promoted honestly, as a tool that may help a minority of patients cope better with chronic illness. That would seem like a reasonable claim, considering that a minority of patients report feeling slightly improved after CBT.

But CBT is inappropriately promoted an actual treatment for CFS/ME, with the potential to improve and cure the illness itself. These widespread but inappropriate therapeutic claims help to prop-up the disproven and discredited hypothetical psycho-social model of illness whereby the illness is said to be caused by its symptoms, and false illness beliefs.

The poor results from the largest CBT studies, including the PACE trial [1], and results from clinical settings [4], demonstrates that CBT does not improve the illness itself, but simply helps a minority of patients to report slightly improved symptoms. The persistent but deeply flawed hypothesis that CFS/ME is an illness perpetuated by false illness beliefs, has caused long-term and widespread harm, neglect and damage to the CFS/ME community, in very many ways. (Far too widespread, far too deep, and far too many harms to go into details here.)

A considerable amount of consistent biomedical research is now being published that demonstrates that there are biomedical abnormalities in CFS/ME patients. Some research is discovering that certain specific biomedical treatments may be helpful for a subset of patients. Biomedical research is ongoing.


References:

[1] White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, Baber HL, Burgess M, Clark LV, Cox DL, Bavinton J, Angus BJ, Murphy G, Murphy M, O'Dowd H, Wilks D, McCrone P, Chalder T, Sharpe M; PACE trial management group. (2011) Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 377:823-36.

[2] White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; PACE trial group. (2007) Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurol. 7:6.

[3] McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, White PD. (2012) Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. PLoS ONE 7(8): e40808.

[4] Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database. (2013) Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. QJM 106:555-65.

[5] Price JR, Mitchell E, Tidy E, Hunot V. (2009) Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database Syst Rev. CD001027.