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What is the M.E./CFS Disease Register about?

Led by: Prof Derek Pheby, Faculty of Society and Health at Buckinghamshire New University.

Aims: The M.E./CFS Disease Register contains details of people with confirmed diagnoses of M.E., who have volunteered to submit their medical information. Participants will be followed up long-term to help improve understanding of M.E./CFS prognosis, of which little is currently known. Information contained within the register will also be used to further support other studies and research by providing a sampling frame (a set of information used to identify a sample population for statistical treatment) that can be used to predict how the wider M.E./CFS population would respond to the same study.

Cost: Action for M.E. gave £26,694 to further develop the M.E./CFS Disease Register in 2013.

Length of study: Ongoing

Study began: 2011

Background information: The M.E./CFS Disease Register was originally developed at the London School of Hygiene and TropicalMedicine as one of six sub-projects funded by the Big Lottery Fund as part of the National M.E./CFS Observatory project. Participants were originally recruited via general practices based in London, East Yorkshire and East Anglia which took part in the epidemiological research of the Observatory project. The register later started taking participants with severe M.E. who had been part of the CHROME project or who volunteered.