Checking our blind spots: current status of research evidence summaries in ME/CFS, by Todd E Davenport, Staci R Stevens, J Mark VanNess, Jared Stevens, Christopher R Snell in British Journal of Sports Medicine, July 2018
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
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.
The paper goes on to discuss the flawed results of the PACE trial into GET and CBT before concluding:
EBP also includes patient perspectives. We should follow the example of engaged patient advocates and citizen scientists in ME/CFS by involving patients as advisory board members on trials and as reviewers on published evidence summaries. Community- based participatory research designs should be elevated to ensure information flows from bedside-to-lab bench, in addition to lab bench-to-bedside. By including evidence from patients in clinical decisions and research, we can begin to address the important blind spots in how we think about and implement EBP.