You guys are good! Those kinds of letters: informative, fact-based - warm my heart. I think it's really hard for people to ignore stuff like that. What I think works is to highlight the gap between CBT's results and a real treatment option that returns one to health. Symptomatic improvement for some people is not a return to functioning and shouldn't be presented like it is - but I think people are mixed up between the two. OF course highlighting how often it doesn't work and the fact that it can have very negative effects is equally important. That's the kind of stuff I think will get across and bring us to the next phase - finding real treatments. Thanks
If anything illustrated the harrowing face of severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), it was the story of the late Lynn Gilderdale in the UK. Lynn's was not an isolated case: it is thought that 10-25 per cent of patents with this diagnosis undergo severe long-term physical illness, have a poor prognosis and receive less understanding from healthcare professionals than they have a right to expect.
A recent article ('Defeatism undermines treatment of chronic fatigue syndrome', IMT, 24-2-'10, www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.htm
l) reported on a British Medical Journal editorial by three eminent London psychiatrists who claimed that 'an air of defeatism' about ME/CFS obscures the fact that treatments 'have been shown to work' and are recommended by the National Institute for Clinical Excellence in Guideline 53.
The reality is less clear cut. The treatments referred to are cognitive behavioural therapy (CBT; designed to manage dysfunctional illness beliefs) and graded exercise therapy (used as part of a biopsychosocial programme predicated on a model of physical deconditioning). Both cognitive-behavioural approaches have a general, non-specific applicability and are used increasingly as symptom management and coping strategies in a range of conditions.
In the context of ME/CFS, cognitive-behavioural approaches are not evidence-based to a level where they can be claimed to be specific 'treatments' - an unsurprising observation, given that the 'syndrome'
diagnosis delivers a heterogeneous population widely believed to contain distinct clinical sub-groups.
The systematic review underpinning NICE Guideline 53 found ten randomised clinical trials on adults, three of these negative with the remainder showing mild-to-modest positive, though non-curative, results.
Recent overviews have confirmed this; a Cochrane review found 15 studies of CBT (including controlled clinical trials) for CFS/ME and took a more cautious view of the evidence and its limitations than the BMJ editorial authors, as did a second recent review. This latter meta-analysis of 13 clinical trials (representing 1,371 patients) found a very mixed bag of studies and reported an overall effect size that was small-moderate by usual standards. Not for nothing did NICE Guideline 53 (Full Guidelines, section 6.3.8, pp 252) state that it did 'not regard CBT or other behavioural therapies as curative or directed at the underlying disease process'.
The view of ME Research UK is that conclusions about efficacy that can be drawn from this small group of heterogeneous trials are suggestive and tentative only. Overall, it seems that around 40 per cent of patients benefit from CBT - confirmed in a very recent clinical study, which reported that 39 per cent of patients responded to the intervention after six months - while the placebo response rates in ME/CFS intervention trials have averaged 20 per cent.
This indicates that while cognitive-behavioural approaches appear to be superior to placebo, less than a majority of patients actually benefit from them - an important concern that is not commonly addressed or verbalised. In addition, it remains entirely possible that much of the apparent treatment outcome reported in these trials relates to non-specific effects, i.e. that good-quality supportive clinical care (in the case of CBT) and self-pacing (in the case of graded exercise therapy) would produce similar results.
At the heart of this 'fraught clinical situation', in the words of the BMJ editorial's authors, is the fact that there are many ME/CFS patients in the UK and Ireland - a majority - with a protracted physical illness, most commonly initiated by an infection, for whom psychological strategies are, at best, a side issue. It is for this reason that all the major ME/CFS charities believe that patients need thorough clinical assessment, accurate early diagnosis and biomedical investigation, and that cognitive-behavioural approaches - whatever their merits in themselves - are not the 'answer' to the biomedical enigma of ME/CFS.
References on request
Dr Vance Spence,
Chairman, ME Research UK,
Perth PH1 5PP, UK.