“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
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.