30/03/2011

PACE Trial


In February 2011 the results of the PACE trial were published in the Lancet. The trial set out to study the effects of three therapies on people with CFS: graded exercise therapy (GET), cognitive behavioural therapy (CBT), and adaptive pacing technique (APT), compared with specialist medical care. It concluded that GET and CBT were moderately helpful and that APT was not. This was hardly ground-breaking, as CBT and GET are merely coping strategies, which should be moderately helpful to anyone with any physical illness, if applied within the patient's own limitations: the researchers would have reached the same conclusions if they had been studying cancer, for instance.

From the point of view of ME patients and specialists however, the PACE trial had several flaws. Firstly the diagnostic criteria used to select participants was a general and very basic one for chronic fatigue, which meant that the study included people with a range of other fatigue-based conditions, including psychological ones. Secondly the study involved travel and exercise, which meant that most people with ME and anyone with severe ME would have been unable or unwilling to take part. And thirdly the researchers did not study the pacing technique used by the majority of people with ME, but a technique of their own which was invented solely for the trial, meaning that the results for this part of the trial were meaningless as a test for pacing per se.

Unfortunately, the results of the trial were widely misunderstood and misreported by the media. As well as confusing ME and the wider range of chronic fatigue states actually studied, reporters ignored the trial's recommendation that further research is needed into better treatments, and demonstrated a fundamental lack of understanding of the difference between GET and just going to the gym. This resulted in inaccurate and potentially dangerous headlines such as "exercise cures ME", and led the ME Association to make a formal complaint to the Science Media Centre.

In fact, the defining symptom of ME is post-exertional neuro-immune exhaustion, which means that exercise makes people with ME worse. Patient surveys indicate that GET is often harmful to people with ME as it is generally not applied within the patient's own limitations.

Action for ME's response to the PACE trail is here, and the ME Association's response is here.