UK ME/CFS Biobank at LSHTM

Written by Klea Isufi

Myalgic Encephalomyelitis (ME), otherwise known as Chronic Fatigue Syndrome (CFS), causes severe and debilitating fatigue with painful muscles and joints, disordered sleep, gastric disturbances, and poor memory and concentration among other symptoms. In some cases, a viral infection, such as glandular fever, is linked to the onset of ME, although a definitive cause is yet to be discovered.

Many people are unaware of the existence of ME/CFS, yet it is estimated that up to 250,000 people in the UK are affected by this illness. Some people have thought of it as psychological in origin or representing general tiredness, however, ME/CFS is a long-term and disabling medical condition characterised by severe and overwhelming fatigue. People with ME can experience extreme disruptions to their everyday life. Some are unable to work or undertake the physical activities of everyday living without collapsing. Social life is affected as a result of being unable to get involved in events and outings, which can lead to isolation, detachment, and in some cases, depression.

There is cynicism around ME and often people are not given appropriate support from healthcare systems or family and friends, who may not understand the condition and its severity. It is therefore vital that we find a biological marker for ME/CFS so that we can progress towards developing a robust diagnostic method, and seeking effective treatments.

At the London School of Hygiene & Tropical Medicine, we are driving clinical and biomedical research for recognition, diagnosis and treatment of ME/CFS. We are home to the UK ME/CFS Biobank, which functions as an open resource for research leading to the discovery of biomarkers for the diagnosis prognosis and stratification (sub-grouping) of cases, and the facilitation of a wide range of research studies now and in the future.


The CureME team in 2016

The UK ME/CFS Biobank began five years ago and currently stores samples from over 500 donors, representing those with ME/CFS, Multiple Sclerosis (MS – a control group) and healthy control donors. Over 30,000 aliquots of blood (collected over two time-points) have been processed and are currently stored at the UCL/RFH BioBank in London. The samples are the first collected in the UK to be made available to external researchers internationally on application.

Collecting and storing blood and data for research are costly procedures, and we need your help to ensure that we can continue this life-changing research to help people suffering from a condition that is so often overlooked. It costs approximately £2,500 to collect and store blood and data from one person at one time point. We want to enhance data collection and analysis and expand biomedical research in the field of ME/CFS. Any gift at any level towards the UK ME/CFS Biobank helps us push forward our mission and make an impact on thousands of lives.

Please visit the following page to support our work today: 

Images courtesy of the CureME team.

Feature image shows liquid nitrogen storage freezers at the UCL/RFH BioBank.

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