Overcoming barriers in myalgic encephalomyelitis/chronic fatigue syndrome research: the CureME participatory model

Research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents unique challenges. These stem from the logistical difficulties created by the degree of disability experienced and heterogeneous diagnostic criteria driven by etiological uncertainty. This is compounded by distrust of research institutions within the ME/CFS community, due to historical mischaracterization of ME/CFS as a psychosomatic disease. This commentary proposes a framework to address the resulting methodological and practical barriers. The CureME Framework draws on the UK ME/CFS Biobank's extensive experience of participatory research and incorporates strategies for effective recruitment and data collection. It is informed by collaborations with individuals with lived experience of ME/CFS including severely affected individuals. This is achieved by integrating co-produced study design, community-engaged recruitment, and adaptations that minimize the cognitive and physical burden of participation. This increases access to research participation, reduces selection bias, and strengthens cohort representativeness. Adopting this approach may enhance methodological rigor, accessibility, trust, cohort representativeness, statistical power, and ethical integrity in ME/CFS research.