Frontiers in Neurology, an open-access journal, published an article about the UK ME/CFS Biobank this week.
This narrative paper describes the journey of how people with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) came together with a multidisciplinary team of researchers to conceptualize and establish the biobank, which provides a critical resource for biomedical research into the disease.
Read the full article, but here a few quick facts:
– The UK ME/CFS Biobank (UKMEB) is the only biorepository in the United Kingdom, and one of few worldwide, dedicated to the study of ME/CFS.
– The biobank currently has data and samples from 600 donors, which includes people with ME, and a comparison group with multiple sclerosis and healthy controls. The samples include people with severe ME.
– The biobank uses the Canadian Consensus Criteria or CDC-1994 criteria for accepting donors with ME.
– A longitudinal sub-cohort has been established of participants having follow-up assessments at multiple time-points. Through the systematic longitudinal collection of clinical data and blood samples, it is possible to investigate associations between clinical characteristics and changes in disease severity over time, as well as in a range of molecular markers, e.g., immune and genetic expression phenotypes.
– As an open resource for quality and ethical research into ME/CFS, biological samples and data have not only been analyzed within our research team but have also been shared with researchers across Europe, America and the Middle East.