frontiers in Neurology: The UK ME/CFS Biobank: a disease-specific biobank for advancing clinical research into ME/CFS (Lacerda et al - 2018)

The UK ME/CFS Biobank: a disease-specific biobank for advancing clinical research into myalgic encephalomyelitis/ chronic fatigue syndrome

This narrative paper describes how people with ME/CFS, together with a multidisciplinary team of researchers, have established the UK ME/CFS Biobank (UKMEB), a unique research infrastructure specifically designed to expedite biomedical research into ME/CFS. We describe the journey that led to its conceptualization and operation, and how the resource has served as a model disease-specific biobank, aggregating human biospecimens alongside comprehensive health information on participants. The UKMEB currently has data and samples from 600 donors including people with ME/CFS and a comparison group with multiple sclerosis and healthy controls. A longitudinal sub-cohort has been established of participants having follow-up assessments at multiple time-points.