Consulting patients in setting priorities in Myalgic Encephalomyelitis (M.E.) research: findings from a national on-line survey.
Childs, Nicola, Robinson, Lisa, Chowdhury, Sonya et al. · Research involvement and engagement · 2015 · DOI
Quick Summary
Researchers asked over 1,100 people affected by ME/CFS what they thought should be the most important areas for future research. The top priorities were understanding what causes ME/CFS, developing better treatments, and improving how quickly and accurately doctors can diagnose the illness. This study shows that patients have strong, clear opinions about what research funding should focus on.
Why It Matters
This study directly incorporates patient voices into research funding decisions—a critical gap since ME/CFS patients have historically been excluded from priority-setting. Understanding patient-identified priorities helps align research investment with the needs of those most affected and can increase the relevance and impact of funded research.
Observed Findings
Disease processes and understanding causation was ranked as the highest research priority by respondents.
More effective treatments and faster/more accurate diagnosis were ranked among the top five priorities.
Sleep research, economic cost research, and psychological aspects were ranked as lower priorities.
Respondents emphasized biomedical research over other research domains in free-text comments.
90.4% of survey respondents reported having M.E. themselves.
Inferred Conclusions
Patients with M.E. prioritize biomedical research into underlying disease mechanisms over other research domains.
Funding decisions should consider the clear preferences of the affected community alongside scientific feasibility assessments.
Patient engagement in research priority-setting is feasible and yields actionable data to inform research strategy.
Severe and debilitating cases warrant specific research focus according to patient-identified priorities.
Remaining Questions
Do patient priorities differ significantly across different geographic regions, disease severity levels, or disease duration?
What This Study Does Not Prove
This survey does not prove that the identified priorities are scientifically the most feasible, cost-effective, or likely to yield breakthroughs. It reflects the opinions of Action for M.E. members specifically and may not represent the views of all ME/CFS patients globally. The study cannot determine why certain priorities (like psychological aspects) ranked lower or whether this reflects patient preference versus prior stigmatization.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →