Re: Tackling fears about exercise is important for ME treatment, analysis indicates
As Prof Chalder acknowledges, the improvements reported in the PACE trial were moderate. This indicates clearly that CBT and GET are not effective treatments for everyone with the illness. It’s essential to note that those with a more severe form of M.E. were not able to take part in the PACE trial. There is still no evidence base for appropriate treatment for these vulnerable house- and/or bed-bound patients.
As this article – and the NICE guideline for M.E./CFS – make clear, GET should only be undertake in the form of a “personalised and gradually increasing exercise programme delivered by a physiotherapist” – but our surveys indicate that this is not always the case. Nevertheless, this cannot account for every report from patients who say that GET causes harm.
Action for M.E.'s 2014 M.E. Time to deliver survey of more than 2,000 people with M.E. found that, of those people who had tried GET, 35% said it they found it helpful or very helpful, 18% reported no change, and 47% said it made their symptoms a bit or much worse. Some had even been given exercise on prescription; there is absolutely no evidence base for this. Indeed, it goes against the NICE guideline.
We have been astounded by the perpetuation of inaccurate and negative stereotypes in some of the press headlines about this research. This leads to ill-informed, judgemental and harmful treatment of people with this debilitating condition, many of whom are among the most neglected in society.
Finally, a suggestion for Dr Timothy M Jordan in Canada: maybe you’d like to share your brilliant, evidence-based cure with the scientists at Stanford University who recently found right arcuate fasciculus abnormality in patients with CFS (Zeineh et al, 2014, Radiology).
Competing interests: No competing interests