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M.E./CFS Disease Register

In 2013, Action for M.E. gave £26,694 to further develop the M.E./CFS Disease Register, led by epidemiologist Prof Derek Pheby, Faculty of Society and Health, Buckinghamshire New University and Action for M.E. Trustee.

The M.E./CFS Disease Register was originally developed at the London School of Hygiene and Tropical Medicine, as one of the six sub-projects funded by the Big Lottery Fund, part of the National M.E./CFS Observatory project. It contains details of people with confirmed diagnoses of M.E., who have volunteered to participate.

Initially, recruitment was via those general practices in London, East Yorkshire and East Anglia which took part in the epidemiological research of the Observatory project. Later, the register incorporated participants with severe M.E. who had been part of the CHROME project, while others subsequently volunteered.

What's the M.E./CFS Disease Register for?

The M.E./CFS Disease Register can be used for long-term follow-up of participants, and thus shed light on prognosis and outcomes of care, about which we know surprisingly little. By linkage, for example, to records held in the UK M.E./CFS Biobank database, it can provide longitudinal clinical histories to augment the detailed data collected on participants upon recruitment to the biobank.

It can also be used as a sampling frame for other studies, for example intervention studies. The register should enable the selection of groups of people with M.E. who are representative of the M.E. population, or of particular subgroups of interest within the M.E. population, and who may wish to participate in such studies on the basis of informed consent.

This will facilitate the performance of intervention studies the results of which can be applied to the population of interest as a whole, unlike most of such studies to date, which have for example been carried out on attenders at a particular clinic, and the results of which are therefore only applicable to that group of patients, who may not be representative of people with M.E. as a whole.

Tasks which will be undertaken during the timescale of the current project include:

  • preparation of the IT application, to make it consistent with the support facilities available at Buckinghamshire New University
  • confirmation of the diagnoses of voluntary applicants, and addition of their details to the database
  • addition of details of biobank participants not currently in the M.E./CFS Disease Register
  • two-yearly follow-up of all participants.

A research programme will also be initiated, including:

  • a five-year follow-up of CHROME participants
  • a one-year diary of sample of participants (to study the relationship between severity of M.E. symptoms and episodes of infection)
  • collaboration with other researchers who may wish to use the facilities of the disease register in their own research. In the past, this has included identification of participants to be invited to take part in genomics research. It could also include intervention studies.

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