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A Disease Register for ME/CFS: Report of a Pilot Study

Derek Pheby1*, Eliana Lacerda2, Luis Nacul2, Maria de Lourdes Drachler3, Peter Campion4, Amanda Howe3, Fiona Poland3, Monica Curran3, Valerie Featherstone4, Shagufta Fayyaz2, Dikaios Sakellariou5 and José Carlos de Carvalho Leite3

Author Affiliations

1 Buckinghamshire New University, Uxbridge Campus, 106, Oxford Road, Uxbridge, Middlesex, UB8 1NA, UK

2 London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK

3 University of East Anglia, Norwich, NR4 7TJ, UK

4 University of Hull, Daisy Building (2nd. Floor) Castle Hill Hospital, Castle Road, Hull, HU16 5JQ, UK

5 School of Healthcare Studies, Cardiff University, Ty Dewi Sant, Heath Park Campus, Cardiff, CF14 4XN, UK

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BMC Research Notes 2011, 4:139  doi:10.1186/1756-0500-4-139

Published: 9 May 2011

Abstract

Background

The ME/CFS Disease Register is one of six subprojects within the National ME/CFS Observatory, a research programme funded by the Big Lottery Fund and sponsored by Action for ME. A pilot study in East Anglia, East Yorkshire, and London aimed to address the problem of identifying representative groups of subjects for research, in order to be able to draw conclusions applicable to the whole ME/CFS population.

While not aiming for comprehensive population coverage, this pilot register sought to recruit participants with ME/CFS in an unbiased way from a large population base. Those recruited are constituting a cohort for long-term follow-up to shed light on prognosis, and a sampling frame for other studies.

Findings

Patients with unidentified chronic fatigue were identified in GP databases using a READ-code based algorithm, and conformity to certain case definitions for ME/CFS determined. 29 practices, covering a population aged 18 to 64 of 143,153, participated.

510 patients with unexplained chronic fatigue were identified. 265 of these conformed to one or more case definitions. 216 were invited to join the register; 160 agreed. 96.9% of participants conformed to the CDC 1994 (Fukuda) definition; the Canadian definition defined more precisely a subset of these. The addition of an epidemiological case definition increased case ascertainment by approximately 4%. A small-scale study in a specialist referral service in East Anglia was also undertaken.

There was little difference in pattern of conformity to case definitions, age or sex among disease register participants compared with subjects in a parallel epidemiological study who declined to participate.

One-year follow-up of 50 subjects showed little change in pain or fatigue scores. There were some changes in conformity to case definitions.

Conclusions

Objective evaluation indicated that the aim of recruiting participants with ME/CFS to a Disease Register had been fulfilled, and confirmed the feasibility of our approach to case identification, data processing, transmission, storage, and analysis. Future developments should include expansion of the ME/CFS Register and its linkage to a tissue sample bank and post mortem tissue archive, to facilitate support for further research studies.