Research bias in ME/CFS

Research in any field can be subject to bias, and this is particularly relevant in controversial areas of research like myalgic encephalomyelitis/chronic fatigue syndrome, where are scientific gaps in scientific knowledge and several opposing viewpoints.

Emphasis on randomized clinical trials and systematic reviews
Following an Evidence-based Practice (EBM) model gives greater weight to systematic reviews and randomized clinical trials.

PACE trial
Davenport et al. (2018) state the lack of randomized clinical trials in ME/CFS research mean that an evidence-based model can be unduly influenced by a very small number of studies, for example the PACE trial found that treating ME/CFS with graded exercise therapy or cognitive behavioral therapy did not result in clinically significant improvements - but this trial heavily influenced the clinical use of those treatments. The PACE trial was so problematic that it was used an the example for Prof. Bruce Levin's presentation How Not To Conduct A Randomized Clinical Trial, and The Lancet received open letters signed by over 100 people, including researchers and academics, calling for the trial to be retracted.

Cochrane systematic review
The highly influential Cochrane review of exercise therapy for chronic fatigue syndrome was also found to have significant flaws.

Bias recognition
Lee (2017) assessed research waste in ME/CFS by comparing the PACE trial with two cellular trials, finding that "selective reporting", an indicator of research waste, was greater in the ME/CFS trial, however this study was not peer-reviewed.

Notable studies

 * 1982, Suffering and the Social Construction of Illness: The Delegitimation of Illness Experience in Chronic Fatigue Syndrome | (Abstract)


 * 2005, Chronic Fatigue Syndrome: Editorial Bias in The Lancet (Abstract) - Not peer-reviewed


 * 2011, Chronic Fatigue Syndrome: Editorial Bias in the British Medical Journal (Abstract)


 * 2017, Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment (Full Text)
 * 2017, Research Waste in ME/CFS (Full text) - not peer reviewed
 * 2018, Checking our blind spots: current status of research evidence summaries in ME/CFS (Abstract) - Editorial
 * 2018, Are ME/CFS Patient Organizations "Militant"? : Patient Protest in a Medical Controversy. (Abstract)

Articles and blogs

 * 2017, PACE team response shows a disregard for the principles of science - Jonathan Edwards