An illness in Crisis: The Subtleties That Led To The PACE Trial And Its Impact On ME/CFS

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a contested illness with no diagnosis. Treatment typically consists of symptom management. This spurred interest in finding ways to help patients with ME/CFS to find new ways of improving and helping them recover. The PACE trial tested and found that Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) were effective therapy options for ME/CFS. However, this trial had a lot of controversies attached to it for various reasons, like methodology changes and misrepresenting results that made the results look more favorable. This trial led to adverse outcomes for ME/CFS patients, impacting their lives and how the illness is seen. However, what isn’t frequently discussed are the various aspects that potentially influenced the lead-up and decision-making of the trial. The biopsychosocial model of ME/CFS and its reliance on the psychological part, the researcher’s prior research and potential allegiance to CBT and GET, and researchers having free rein to make their own research decisions without critique all played subtle roles in leading to the trial and its outcome. By exploring these different factors, one can see these factors and how to prevent that for future ME/CFS studies and other contested illnesses, restoring trust toward researchers.