Founder of Health Rising and Phoenix Rising
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”.
Studies emanating from the PACE trial continue to appear. MERUK - a UK research organization - dug into the latest one - a 30 month followup - after the media once again had a field day with the findings. Every time I read stuff like this I am glad I don't live in the UK. Once again the study got into a Lancet journal.
Media ballyhoo over PACE (again)
The latest spin-off scientific paper from the PACE trial is out today in The Lancet Psychiatry. 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” http://dailym.ai/1O7yQT8 and the Daily Telegraph piping up “Chronic Fatigue Syndrome sufferers'can overcome symptoms of ME” http://bit.ly/1kRHcli.
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. It’s high time the media wised up and realised that unwarranted hoopla in favour of psychological therapies misleads the public and does no service to biomedical researchers, or to patients going to healthcare professionals for help. Our letter to the Daily Telegraph and other websites is pasted below.
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 (http://bit.ly/1ki4MkV).
- 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 (http://bit.ly/1jReUao).
- 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