Following the publication of the latest PACE trail paper in the Lancet on 13th January, there has been a flurry of media reports, many of which promote the findings as good news.
Other articles counter the claims saying:
- people with ME are highly motivated to recover and be active
- the paper ignores evidence of muscle, brain and immune system abnormalities in ME/CFS, which are more likely to cause the debilitating central (brain) and peripheral (muscle) fatigue
- energy management programmes, not graded exercise, are more appropriate aids to recovery
- CFS/ME is not one condition, but consists of subgroups, so patients need approaches that are tailored to the individual
- the PACE trial produced evidence of only modest recovery
- the PACE trial was accused of serious failings and inaccuracies in the way it conducted the trial, presented information and measured recovery
- trial participants were told they would recover using CBT and GET so the study could have measured the placebo effect, not fear avoidance
- contradicts earlier research by one of the researchers who found that CFS patients do not have an exercise phobia
WAMES joins other ME charities and organisations in rejecting the unscientific conclusions of the PACE trial and uncritical reporting of the study, and calls for research treatments that takes account of the research showing multi-system dysfunction.
ME Research UK writes: Fear avoidance of exercise?
The Lancet Psychiatry has just published the latest analysis based on data gathered during the MRC-funded PACE trial (2011). This is the sixth sub-analysis in the series – others have dealt with cost-effectiveness, pain, ‘recovery’, adverse effects and statistical methods – but it is the most difficult to understand, as it deals with the ‘mechanisms’ that may underpin the effect of cognitive behavioural therapies (CBT) or graded exercise.
Using very sophisticated statistical analysis, the researchers eventually conclude that ‘fear avoidance beliefs’ (that exercise will make symptoms worse) by the patient is a major factor in the success or otherwise of these therapies.
While this report may be fascinating to professional cognitive-behavioural theorists, the central fact remains – as the original PACE trial data showed (see our previous comment) – that the effects of these psychosocial approaches are modest, benefiting only around 10 to 15% of ME/CFS patients over and above the benefit of standard medical care (Table).
The majority are not helped back to health using these techniques, something confirmed time and time again when ME charities survey their members. As the Editorial accompanying this study says, most patients do not recover after these interventions, and “quite a few patients do not profit at all”. Indeed.
The tragedy is that every time one of these sub-analyses of PACE trial data is published, a rash of media stories trumpet its arrival. For instance, the Independent newspaper has headlined the “benefits of exercise”, while the Daily Mail goes for, “victims suffer fear of exercise” and the Daily Telegraph “ME: fear of exercise”. These stories are presumably based on the press release and run-off to satisfy the 24-hour news cycle, but they have little or no relevance to the real, lived experience of ME patients.
We all know that ME patients are highly motivated to get well, and more than willing to do whatever activity or exercise is appropriate for their personal circumstances, from a short walk to sitting up in bed. The notion of ‘fear avoidance’ seems inappropriate and absurd in this context, however fascinating the concept may be to academic psychologists. [Posted on 15 Jan 2015]