I welcome the suggestion that patients with myalgic encephalomyelitis (also known as chronic fatigue syndrome; ME/CFS) should not be dismissed (M. Sharpe et al. Nature 554, 31; 2018). However, as someone who has been diagnosed with ME/CFS for 25 years, I contend that this argument should not be misused to perpetuate ineffective therapies that could raise false hopes and might amount to mistreatment.
As you point out (Nature 553, 14–17; 2018), the PACE trial authors (including two co-authors of Sharpe et al. in Nature) and others promote a form of cognitive behavioural therapy that assumes ME/CFS symptoms can be reversed by teaching people to think differently, and a prescribed form of graded exercise that might be harmful (see also K. Geraghty et al. J. Health Psychol. http://doi.org/ck7j (2017), and J. Health Psychol. 22, iss. 9 (2017), for example).
Sharpe and colleagues urge readers not to reject scientific evidence that supports the use of such approaches. However, the Cochrane Reviews they cite rely on the results of the disputed PACE trial and several other studies that have similar methodological flaws. It is also notable that Sharpe and colleagues concluded: “There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up” (see M. Sharpe et al. Lancet Psychiatry 2, 1067–1074; 2015).
The returns might be some way off, but the latest moves to pursue the growing evidence that ME/CFS symptoms are rooted in pathology is the proper approach (see, for example, go.nature.com/2fimftx).
Nature 555, 311 (2018)
Sign up for the daily Nature Briefing email newsletter
Stay up to date with what matters in science and why, handpicked from Nature and other publications worldwide.