Checking our blind spots: current status of research evidence summaries in ME/CFS

The evidence-based practice (EBP) model hierarchically organises scientific information by level, from lowly case studies to lofty systematic reviews and clinical trials. Clinical trials best influence recommendations because they putatively have the greatest internal validity.1 This assumption is based on sound research ethics, such as scientific competence and good faith actors, as well as observed differences in outcomes. An EBP blind spot emerges when fundamental assumptions are unmet. Based on findings of a 2018 PEDro evidence summary in BJSM 2 and elsewhere,3 it now seems clear that scientific research in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) resides in a blind spot. ME/CFS is estimated to affect 836 000 to 2.5 million people in the USA.4 Ninety per cent of cases are thought to go undiagnosed,4 suggesting that people with ME/CFS are substantially undercounted, underdiagnosed and undertreated. Substantial literature exists to support that ME/CFS is a multisystem condition that appears associated with a combination of genetic, cellular and systemic metabolic deficits in …