The UK ME-CFS Biobank
Better recognition, less stigma, improved diagnosis and treatment
Building on feasibility studies, the UK ME/CFS Biobank project set out to establish the UK’s first biobank of biological samples for research on ME/CFS. The project launched in August 2011 with the support of Action for ME, The ME Association, and ME Research UK, as well as private donations. The project is led and managed by the London School of Hygiene & Tropical Medicine. Samples are processed and securely stored at the state-of-the-art University College London/Royal Free Hospital Biobank (UCL/RFH Biobank) in London.
"The creation of a biobank infrastructure for ME/CFS, linking bio-specimens with clinical, disease and other data over the long term, is a very welcome advance. We need to know far more about the causes and consequences of this illness which has been overlooked for too long."
- Dr. Neil Abbot, Research & Operations Director, ME Research UK
About the project
This pioneering ME/CFS Biobank is the only one in the UK aimed at the study of ME/CFS and the first of its type to be launched in Europe. The Biobank functions as an open resource for clinical and biomedical research into ME/CFS, and in particular for research leading to the discovery of biomarkers for the diagnosis, prognosis, and stratification (sub-grouping) of cases, enabling a wide range of research studies now and in the future.
"The Biobank is a much-needed resource, adding capacity and creating value for the research community and ultimately for people with M.E. Working collaboratively, we will increase efficiency and effectiveness which is critical if we are to achieve our vision of a world without M.E."
- Sonya Chowdhury, Chief Executive, Action for M.E.
Assessments and sample collection
Participants with ME/CFS complete clinical assessments to confirm their diagnosis and enable comprehensive clinical characterisation (phenotyping), and can then donate blood samples. Similar procedures apply to healthy controls. These procedures are important so that clinical and other parameters from people with ME/CFS can be correlated and also compared to data and samples from people without ME/CFS.
Some Biobank participants are asked to have repeat assessments and samples taken, thus forming a long-term cohort of individuals enabling clinical and laboratory findings to be correlated with factors such as the presence of viral infections, gene expression, and immunological status.
These factors may fluctuate over time in concert with the symptoms of disease, and, together with a person’s genetic make-up (genotype) and environmental factors, help define the way each person presents clinically (phenotype).
The Biobank is compliant with the Human Tissue Authority and with the most rigorous procedures to ensure confidentiality and the ethical management of data and tissues. All data and samples provided by people with ME/CFS are anonymised before they are used in research.
"Setting up the ME Biobank marks a major step forward in providing researchers with a ready source of blood samples and clinical information. This will enable many aspects of research into both cause and management to be carried out quicker, more effectively and at less cost. Congratulations to the whole Biobank team!"
- Dr. Charles Shepherd, Hon Medical Adviser, ME Association