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Treating ME: what works?
Friday 22 April 2011
Treating ME: what works?
I was alarmed to read your news item titled ‘Hope for ME sufferers as study results support effective therapy’ (Therapy Today, March 2011) which was based on the report of the PACE trial recently published in The Lancet.1 Unfortunately the results of this research are very strongly contested by the ME community at large – by which I mean people who have ME.
I am writing to you as a member of BACP and a practising counsellor, but also as someone who has had the illness for approximately 14 years, and who is an active member of my local ME support group, as well as a member of the two main national organisations supporting adults with ME.
The PACE trial reports that ‘CBT and GET (graded exercise therapy) can safely be added to SMC (specialist medical care) to moderately improve outcomes for chronic fatigue syndrome, but APT (Adaptive Pacing Therapy) is not an effective addition’. Strangely this research contradicts both the reported experiences of members of our local group, and the results of a number of national readership surveys carried out by the ME Association and Action for ME.2, 3
The results of the Action for ME Survey 20084 found that 82 per cent of respondents found pacing helpful, 15 per cent experienced no change, and three per cent were made worse; 45 per cent found graded exercise helpful, 15 per cent experienced no change, and 34 per cent were made worse; and 50 per cent found CBT helpful, 38 per cent experienced no change, and 12 per cent were made worse.
The ME Association Survey 20102 found that 71 per cent of respondents improved after pacing, 24 per cent experienced no change, and 5 per cent were made worse; 22 per cent improved after graded exercise, 21 per cent experienced no change, and 57 per cent were made worse; and 26 per cent improved after CBT, 55 per cent experienced no change, and 20 per cent were made worse. (Other smaller surveys by the same organisations have produced very similar results.)
Pacing was the intervention judged to be the most helpful by members of the two largest membership organisations of adults with ME, but it has been described by the PACE trial as doing ‘little more than help sufferers manage their illness’. Conversely, interventions judged by members of these organisations to be less helpful, and in some cases positively harmful (GET 57 per cent, CBT 26 per cent) are stated by PACE to be able to be safely added to treatment options.
In our local group we have held several meetings at which members hold unstructured discussions about what has helped them most. Many ideas come up that are sadly not available on the NHS, but the one intervention that the NHS does offer that is found to be helpful is pacing, yet this is the approach that the PACE study states ‘does little more than help sufferers manage their illness’ (incidentally this is an outcome that many of our members would welcome!). In contrast our group members have never mentioned GET as being helpful, and some members have been quite severely harmed by it. Similarly CBT has been found to be helpful by a few members, but it does seem to depend very much on the CBT therapist, and some are experienced as severely lacking in understanding of the illness, and potentially harmful.
Dr Charles Shepherd, the medical advisor to the ME Association, has commented: ‘We find the trial results extremely worrying because pacing, in the form that the MEA recommends, may as a result no longer be offered as a treatment option in NHS clinics. And at the same time, NICE may well strengthen its inflexible and unhelpful recommendations regarding CBT and GET.
‘We also fear that the way in which the results are already being reported in media headlines – eg ‘Got ME? Just get out and exercise,’ say scientists – will lead some doctors to advise inappropriate exercise regimes that will cause a serious relapse. This is not a good day for people with ME/CFS. They have a complex multisystem illness that requires a range of treatment options based on their individual symptoms as well as the stage and severity of their illness.’4
Both charities are preparing detailed responses to the PACE report, which will hopefully clarify why there is such a disparity between PACE and the lived experience of people with ME. In the meantime my fears are similar to Dr Shepherd’s, and my reason for writing to you is to urge counsellors and therapists not to recommend exercise regimes to their clients and risk causing a serious relapse. This applies particularly to CBT therapists, who may be tempted, on the basis of the PACE report, to describe the cautious approach to exercise of a client with ME as being based on an ‘irrational belief’ about the illness, rather than respecting the client’s own lived experience.
ME is a very variable illness, in the degree of severity, the nature of the symptoms, in precipitating factors, and in what is helpful to manage and/or cure the disease. When our local group meets we are always careful to remind each other that what works for one may not work for another. If this letter makes all your readers aware of this very significant aspect of the illness then it will have achieved its object.
1. Sharpe M et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet. 2011; 377(9768):823-836.
The above originally appeared here.
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