“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, ME Research UK
The Biobank functions as an open resource for clinical and biomedical research into ME/CFS, and in particular for research into biomarkers of the disease. It empowers research into the diagnosis, prognosis, and stratification (sub-grouping) of ME/CFS, enabling a wide range of research studies in an extremely cost-effective manner.
The UKMEB is the first ME/CFS-specific biobank in Europe and one of the first in the world. The biobank’s rigorous, disease-specific protocols enable strong conclusions to be drawn from its samples, and have served as a model for other biobanks across the globe. The UK ME/CFS Biobank currently stores samples from over 600 donors included those with ME/CFS, MS and healthy control donors. Over 30,000 aliquots of blood (collected over multiple time-points) have been processed and are currently held at the UCL/RFH Biobank in London.
The UKMEB is the only biobank at the London School of Hygiene & Tropical Medicine, and is a notable part of LSHTM’s diverse research agenda. The UKMEB has distributed samples to researchers in the UK, Europe, the Middle East and America.
Participants with ME/CFS complete clinical assessments to confirm their diagnosis and enable comprehensive clinical characterisation (phenotyping). Following this, they then donate blood samples. Similar procedures apply to our two control groups: Multiple Sclerosis and Healthy. These procedures are important so that clinical parameters from people with ME/CFS can be correlated and compared to data and samples from people without ME/CFS.
Many 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 Act 2004 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/CFS Biobank shows how patients, charities and researchers can all work together to create a unique item of research infrastructure.
Thanks to the enthusiasm and dedication of the whole Biobank team, the Biobank is now open and providing samples and clinical data to research groups both here and abroad. All of which represents a major step forward in helping us to discover the cause, diagnostic biomarkers and effective forms of treatment for people with ME/CFS.”
Dr Charles Shepherd, Medical Adviser, The ME Association