Re: Pressure grows on Lancet to review “flawed” PACE trial
As others have noted [1,2] scientific criticism of the methodology of the PACE trial [for example: 3,4,5] is independent of disagreement about the causes and mechanisms of ME/CFS.
From a patient’s perspective, the main issue with the PACE trial is not that it implies that ME is "all in the mind" but that it recommends treatments which don't work and are potentially harmful .The unhelpful belief, perpetuated by the trial, that ME can be “reversed” by teaching patients to think differently and/or gradually increase exercise has not only led to the mistreatment of patients but it has also inhibited biomedical research which may have led to diagnostic tests and effective treatments.
As someone who has been severely disabled by ME for more than 26 years, I would be delighted if my illness could be cured, or my symptoms alleviated, by PACE-type cognitive behavioural therapy and/or graded exercise therapy. But the sad truth, based on the scientific evidence as well as my own painful experience, is that it cannot. That so many have been persuaded otherwise, at such cost to patients, by such profoundly flawed research suggests that the problems with psychological medicine may run far deeper than just one study.
1. Edwards JCW. Re: Pressure grows on Lancet to review “flawed” PACE trial. BMJ 2018;362:k3621https://doi.org/10.1136/bmj.k3621
2. Kewley AJ. Please do not misunderstand patients views. BMJ 2018;362:k3621https://doi.org/10.1136/bmj.k3621
3. Wilshere CE et al. Rethinking the treatment of chronic fatigue syndrome – a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC Psychology. March 2018: https://doi.org/10.1186/s40359-018-0218-3
4. Journal of Health Psychology special Issue: The PACE trial. Vol 22. Issue 9. August 2017. http://journals.sagepub.com/toc/hpqa/22/9
5. Racaniello VR et al, Open letter to The Lancet version 3.0, Virology Blog, August 2018.
7. Geraghty K et al. Journal of Health Psychology. August 2017.
Competing interests: No competing interests