The latest spin-off scientific paper from the PACE trial is out this week in The Lancet Psychiatry (read here). As usual, there is widespread misleading coverage in the press, with the Daily Mail trumpeting “ME can be beaten by taking more exercise and positive thinking” and the Daily Telegraph piping up “Chronic Fatigue Syndrome sufferers’can overcome symptoms of ME”.
The media ballyhoo shockingly over-inflates the importance of the findings – which simply show that clinical outcomes are much the same in the 4 groups in the trial after a follow-up of 30 months. Fortunately,the Daily Telegraph also published Jill Stratton’s story about living with ME. As Jill says, “This research feels like once again we are being led up the garden path, our suffering being belittled and dismissed as psychological, and once again we face an uphill battle to convince everyone that what we are experiencing is genuine. Professor Michael Sharpe talks about the ‘vocal minority’ who feel like they are being dismissed. Well, yes, I do feel like that, and I think it’s important to keep being vocal until we have proper answers. I can’t imagine sufferers of any other illness being treated like this”
Our letter to the Daily Telegraph and other websites on October 28th 2015 is pasted below.
Sirs
This story is no more than spin, based on an over-hyped press release. In fact, the actual scientific paper reports on a postal survey of ME/CFS patients, 30 months after they took part in a large-scale clinical study (the PACE trial) comparing cognitive behavioural or graded exercise therapy with standard medical care or activity pacing. The real findings are unremarkable; as the authors themselves say, “There was little evidence of differences between the four groups in fatigue or in physical functioning at long-term follow-up”. The authors may speculate that patients in the standard medical care or pacing exercise groups were ‘helped’ by additional psychological therapies in the 18 months after the end of the trial, but they don’t know that for certain, and nor do they show data to back up their claim. The reductions in symptoms could equally well be due to improvements in the illness over time; to the long-term effects of the standard medical care or activity pacing; or to a range of other factors.
We need to get past the hype, and look at the real problems facing the research and treatment of people with ME/CFS. First, clarify diagnosis; we know that 40% of patients referred to clinics with ME/CFS are eventually diagnosed with another disease – so proper clinical-evaluation-based diagnosis (including the exclusion of other disorders) is urgently needed (see article). Second, put psychology in perspective; we know that psychological therapies help some people cope with chronic illnesses like cancer and MS but we recognise that they are not specific treatments and are certainly not curative – there is now ample evidence that the same is also true for ME/CFS, and healthcare professionals everywhere need to accept the fact (see article). Third, beef up the science; with psychology in its proper place, biomedical investigation (and funding) should focus on developing and using all the tools in the clinical and therapeutic armoury needed to treat and (ultimately) cure the underlying disease.
Dr Neil Abbot, ME Research UK
