A new article, written by Ella Abken from the CureME UK ME/CFS Biobank, and funded by the ME Association and the NIH, has been published in Frontiers in Human Neuroscience.
Titled ‘Overcoming barriers in myalgic encephalomyelitis/chronic fatigue syndrome research: the CureME participatory model‘ (Abken et al 2026), this article discusses the long-standing problems in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research, that can be addressed through a more participatory, patient-centred approach. This is based on the authors' experience with the CureME UK ME/CFS Biobank.
Summary (AI, checked by MEA)
- Main message: Involving people with ME/CFS as research partners leads to better-quality research.
- Problem: Traditional studies often exclude the sickest patients and use inconsistent methods.
- Approach: Co-design studies with patients, reduce participation burden, and enable home-based involvement where possible.
- Benefits: More representative participants, less bias, improved trust, and stronger research.
- Key takeaway: Better study design and meaningful patient involvement can improve the reliability and relevance of ME/CFS researcht
Abstract
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.
MEA Comment
This article is an important contribution to ME/CFS research. It highlights that patient and public involvement (PPI) isn't just good practice—it strengthens the science by improving recruitment for research studies thus ensuring those who are severely affected are included.
We are fully supportive of the UK ME/CFS Biobank (UKMEB) and pleased to see Ella Abken, Sarah Tyson and Caroline Kingdon's article has been published.
Further information
- Update UKMEB Steering Group: ME Association investment in UK ME/CFS Biobank exceeds £1M | May 21, 2026
- The ME Association: UK ME/CFS Biobank
- UK ME/CFS Biobank Website