CBT and exercise no cure for ME / CFS sufferers

On 18 February The Lancet published a British study, PACE, which studied the effectiveness of CBT and gradually increased training in the disease ME / CFS (chronic fatigue syndrome) [1]. The subsequent headlines in the media has gone far beyond the conclusions reached in the study that the cumulative evidence in question.

The study in The Lancet makes clear that CBT and gradually increased exercise (GET) is not a cure for ME/CFS. Authors White et al acknowledge that the treatment results have been modest and that new research is needed to find effective treatments for ME/CFS: “Our finding that studied treatments were only moderately effective also suggests research into more effective treatments is needed.” The authors also admit that the results provides no support for an underlying psycho-genesis, as is often claimed by supporters of CBT and GET: “The effectiveness of behavioural treatments does not imply that the condition is psychological in nature.”

According to the study in the Lancet CBT and GET gave moderate treatment benefit in patients. Table 5 shows that that best improved 'Global Impression of health "in 41% of the participants, which thus means that the treatments had no effect in nearly 60% of patients. In addition to a 6 minute walking test measure, with very modest improvements, lacked any objective performance parameters.

The study is based on the so-called Oxford criteria, but has also been analyzed in two other criteria categories. The use criteria categories used cover a much more heterogeneous population than the so-called Fukuda criteria and the Canadian consensus criteria normally used by international researchers. No severely ill ME/CFS patients were included in the study, and 47% of participants had a psychiatric diagnosis (Table 2).

The small and subjective improvement reported for a heterogeneous group of patients in the PACE study must be weighed against other, more negative results in similar studies. In a Spanish study of patients who met the more stringent Fukuda criteria the authors Núñez et al concluded that CBT and GET used over 12 months did not lead to any improvement, but rather deteriorating physical function and pain [2]. Even the sister study to the PACE, called FINE (both funded by the British authorities), gave essentially negative results [3].

There are also several surveys made by patient associations in Britain and Norway, which together represent a base of several thousand patients with much more varied severity of the disease than in the PACE study. All these surveys show that the negative effects of CBT and GET are considerable. Therefore, there is currently no reason for RME to reconsider our  sceptical attitude to CBT and GET.

Recent studies and surveys presented in the following summary: click here.

In summary, CBT and GET are not curative treatments for ME / CFS, and that everyone agrees on the need for more research that could lead to effective treatments. Biomedical research that clarifies the disease, identifies subgroups and finds effective remedies must henceforth be given the highest priority.

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, on Behalf of the PACE trial management group. Comparison of adaptive pacing therapy, cognitive behavior therapy, Graded Exercise Therapy, and specialized medical care for chronic fatigue syndrome (PACE): a randomized trial. Lancet. February 18, 2011. DOI: 10.1016/S0140-6736 (11) 60096-2. www.thelancet.com/journals/lancet/article/PIIS0140-6736 (11) 60096-2/fulltext

2. Health-related quality of life in patient with chronic fatigue syndrome: group cognitive behavioral therapy and graded Exercise versus usual treatment. A randomized controlled trial with 1 year follow-up. Núñez et al, Clin Rheumatol. 2011 January 15th [Epub ahead of print]

Abstract: www.ncbi.nlm.nih.gov/pubmed/21234629

3. The FINE Study: Nurse point, home based self help treatment for patients in primary care with chronic fatigue syndrome: randomized controlled trial, Wearden et al, BMJ 2010; 340: c1777. www.bmj.com/content/340/bmj.c1777 . full.pdf + html

February 20, 2011

Lisa Forstenius

Chairman

National Society of the ME patients, RME

www.rme.nu