The CureME team at the London School of Hygiene & Tropical Medicine (LSHTM) established the UKMEB with funding from the US National Institutes of Health and with donations from charities including the MEA; it enjoys an international reputation for quality and efficiency. One feature has been the inclusion of people who are severely affected by ME, who are visited at home by a research nurse for the clinical assessment and blood draw.

The UKMEB has provided samples and data to many ME/CFS research groups in the UK, Europe, North America, Latin America, and the Middle East. The true worth of the facility is underlined by the publications coming from the release of samples and the associated papers, which are widely cited in the literature and continue to serve to advance knowledge and understanding of ME/CFS.

Global Footprint of UKMEB Samples - World map with list of countries
Global Footprint of UKMEB Samples
“Having been involved with both the planning and the operation of the ME/CFS Biobank I am immensely proud of what has been achieved.  We now have a world class piece of research infrastructure that enables researchers who may not have access to patients with ME/CFS to obtain anonymised clinical information and blood samples to carry out laboratory based research. I would also like to thank all our volunteers who donate blood and the very dedicated teams at the LSHTM and the Royal Free Hospital – where the Biobank is housed as part of the main University College London Biobank.”
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Dr Charles Shepherd, confirms the importance of Cure ME Biobank

About the Samples

Blood samples are processed and aliquoted (separated) into serum, plasma, peripheral blood mononuclear cells (PBMC), red blood cells / granulocyte pellet, whole blood, and RNA.

The samples are then processed into different components and stored before being released to researchers whose research proposals have gone through rigorous ethical approval and peer review. An extensive clinical dataset (700 clinical and socio-demographic variables) enables comprehensive phenotyping (sub-grouping).

People with ME/CFS are carefully screened to make sure they meet diagnostic criteria for the disease. Blood samples are collected and rapidly transferred to the ME/CFS Biobank at the Royal Free Hospital in London – where they are processed and stored.

Making these samples available to other researchers increases the chances of achieving much-needed breakthroughs in the aetiology / cause and treatment of ME/CFS, in the most cost-effective manner. 

This is the only such project in the UK aimed at the study of ME/CFS and the supply of samples to outside researchers.

“The LSHTM CureME team welcomes the yearly funding from the MEA Ramsay Research Fund, as it greatly facilitates further blood collection, the storage of samples and data, and dissemination of information around the UK ME/CFS Biobank.
The success of this unique collection is testament to the strict quality and operational controls in place since its inception, which have been guided by people with ME/CFS and experts in the field.”
Caroline Kingdon,
Research Fellow, and Biobank Coordinator
Caroline Kingdon

Plans for the UKMEB

1. Replenish samples

The team constantly replenishes the aliquots which have been depleted by recruiting additional research participants. This requires additional nursing time and the cost of clinical tests and of processing and storing samples.

The team is adding a sub-cohort of participants with Long-Covid, including those presenting with ME/CFS features, as well as people who had Covid but made a full recovery.

2. Increase clinical and educational work

The team will continue to produce educational resources to people with ME/CFS, fellow researchers and healthcare professionals.

3. Grow communication and fundraising

The team intend to appeal to major donors, with the help of the LSHTM’s fundraising team, to enhance the UKMEB’s global profile and to attract further users.

The goal has always been that the UKMEB would become self-sustaining and significant progress has already been made in this regard.

Benefits of Using the UK ME-CFS Biobank - infographic process chart
Benefits of Using the UK ME/CFS Biobank
Image of scientific researchers in a laboratory testing samples with a microscope
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