Myalgic Encephalomyelitis (ME) is a chronic, fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. ME affects an estimated 1 in 500 people in the UK, and around 17 million people worldwide. It is four times more common in women than in men. The clinical definition of ME/CFS varies between countries, however all definitions include persistent fatigue associated with post-exertional malaise, the body’s inability to recover after expending even small amounts of energy, and the disease has as a result also been referred to as Chronic Fatigue Syndrome (CFS) .
The UK ME/CFS Biobank (UKMEB) project launched in August 2011, is managed by CureME at the London School of Hygiene & Tropical Medicine and is overseen by a Steering Committee comprising of patient/carer representatives, academics and charity stakeholders. The UKMEB is the first ME/CFS-specific biobank in Europe, and one of the first in the world. It has collected over 30,000 aliquots of blood from patients with ME/CFS and multiple sclerosis (as well as healthy controls), using a rigorous and consistent set of scientific protocols. It officially launched to external researchers on 12th May, 2016 (International ME/CFS Awareness Day) and has shared samples with researchers based as far afield as Spain and Brazil working on projects as diverse as microRNA and retroviruses.
The UKMEB has recently received funding from the US National Institutes of Health (NIH) encouraged by the developing technology and intriguing preliminary results. “This is a very good time for us to invest in ME/CFS research” commented Dr. Christopher Beisel, Program Officer at the NIH.
“We are trying to develop an international network of biobanks focused on ME/CFS research”. – Erinna Bowman, Research Fellow, CURE-ME team, London School of Hygiene & Tropical Medicine .
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