Cognitive behavioural therapy for ME/CFS is not effective. Re-analysis of a Cochrane review, by Mark Vink and Alexandra Vink-Niese in Health Psychology Open

Review abstract:

Analysis of the 2008 Cochrane review of cognitive behavioural therapy for chronic fatigue syndrome shows that seven patients with mild chronic fatigue syndrome need to be treated for one to report a small, short-lived subjective improvement of fatigue. This is not matched by an objective improvement of physical fitness or employment and illness benefit status.

Most studies in the Cochrane review failed to report on safety or adverse reactions. Patient evidence suggests adverse outcomes in 20 per cent of cases. If a trial of a drug or surgical procedure uncovered a similar high rate, it would be unlikely to be accepted as safe. It is time to downgrade cognitive behavioural therapy to an adjunct support-level therapy, rather than a treatment for chronic fatigue syndrome.

From the discussion section of the paper:

Our analysis of the RCTs included in the Cochrane CBT review identified 12 areas of concern. These included potentially selecting patients who do not have the disease. A failure to exclude patients with comorbid depression and anxiety, even though CBT is the most effective treatment for both, as a meta-analysis by Tolin (2012) found. One of the other important problems of the trials and the review itself was the use of subjective primary outcomes even though in non-blinded trials, self-reported outcomes can
produce highly inflated estimates of treatment-related benefits contrary to objective outcome measures (Wilshire et al., 2018b). Moreover, it is unclear why the trials relied
on subjective primary outcomes when the basis of CBT for CFS is that patients suffer from false illness beliefs and they do not know how to interpret their symptoms correctly.

The flaws in the review and the trials, as discussed at the beginning of this article, all created a bias in favour of the intervention. It was therefore crucial to demonstrate
accompanying improvement on more objective measures yet these did not yield significant treatment effects. Most notably, treatment did not affect fitness.

Our analysis shows that CBT did not improve the quality of life scores either, in a disease where these scores are much lower than in the general population and the lowest compared to 20 other chronic illnesses which included stroke, lung cancer and MS (Falk Hvidberg et al., 2015). Nothing has changed in that respect compared to the 1996
health status report (Komaroff et al., 1996) despite the widespread use and promotion of CBT and GET as effective treatments, which provides indirect evidence of their inefficacy…

Real-world application of CBT in NHS CFS clinics shows equally poor results. Moreover, patients who had been treated with CBT and GET in these clinics had less improvement in fatigue at 12 months than those who had been offered activity management (Crawley et al., 2013).

This is in line with the outcomes of patient surveys which have repeatedly shown that rest and activity management (pacing) are the most helpful, with CBT and GET among the least effective therapies (Kirke, 2017). Just 3 per cent of CFS patients report no longer having CFS after NHS treatment; 2–5 years after the initial assessment, this was 5.7 per
cent (Collin and Crawley, 2017), which is essentially the same as the naturally occurring recovery rate of 5 per cent (Cairns and Hotopf, 2005).

The impact of CFS results in disruptions to productivity and meaningful occupation, which is often not the case with other conditions (Roberts, 2018). An influential systematic review by Cairns and Hotopf concluded in 2005 that because there is increasing evidence for the effectiveness of CBT and GET, that ‘Medical retirement should be postponed until a trial of such treatment has been given’.

Yet our reanalysis, just like the reanalysis of the Cochrane GET review (Vink and Vink-Niese, 2018b), shows that CBT and GET do not improve the number of hours worked or sickness and disability benefit status.

Implications for practice

1. For clinicians
If a skilled CBT therapist is available, who acknowledges the severity of this debilitating multisystem disease, then offering CBT to patients as an adjunct support therapy is
something to consider. Especially when patients also suffer from a comorbid depression or anxiety disorder or have problems adapting to a life of disability/dependence on others. The findings of this reanalysis do not encourage to instigate treatment programmes of CBT for people with CFS as has been the case so far.

2. For policymakers, occupational health services and illness benefit assessors
This reanalysis shows that CBT does not lead to an improvement of fitness, a reduction of the number of patients on sickness and disability benefits or an improvement of employment status. Forcing patients to undergo this expensive treatment as a requirement to be eligible for illness benefits or medical retirement causes a lot of stress for
patients and their families without any benefits to patients and society.

3. For people with CFS
For many patients with CFS, becoming involved in a CBT programme has been compulsory to be eligible for illness benefits or medical retirement. Based on the notion that if they did not want to be treated with CBT, they were after secondary gains and not motivated to get better. This reanalysis however shows that CBT does not lead to significant improvement in quality of life. Nor does it lead to an improvement in fitness or employment status or reduction of the number of patients receiving sickness and disability
benefits.

In any event, people with CFS, if offered this therapy, should know that any effect on fatigue is likely to be short-lived and small in degree. Also, that six out of seven patients will undergo the treatment without any benefit andone in five will suffer negative consequences because of it. However, if patients suffer from a comorbid depression or
anxiety disorder, or they need help coping with a debilitating illness, then it would be wise to consider help or support from a qualified and knowledgeable psychologist.