In 2006 the National CFS/ME Observatory was established; a research network of three UK universities and the National Health Service. Sponsored by Action for M.E. and financed by the Big Lottery Fund, the Observatory conducted studies that helped characterise the burden of disease and its impact on the quality of life for affected individuals and their carers. Studies also mapped the needs of people with ME/CFS and the services available to them.
Following the success of the Observatory, a feasibility study was carried out to establish whether there might be interest and demand for a tissue and biobank. Focus group discussions amongst people with ME/CFS found support for the development of a biobank providing rigorous protocols were in place for collection, transport and storage of samples; and that ethical issues were thoroughly considered.
The UK ME/CFS Biobank project launched in August 2011 with the support of Action for ME, The ME Association, ME Research UK and considerable private donations. The project is led and managed by CureME at the London School of Hygiene & Tropical Medicine. The UK ME/CFS Biobank officially launched to external researchers on 12th May, 2016 (International ME/CFS Awareness Day).