Research paper, ME/CFs prevalence in three regions of England, BMC Medicine, 28 July 2011

From BMC Medicine, 28 July 2011 (open access journal)

Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care

Luis C Nacul, Eliana M Lacerda, Derek Pheby, Peter Campion, Mariam Molokhia, Shagufta Fayyaz, Jose CDC Leite, Fiona Poland, Amanda Howe and Maria L Drachler.

BMC Medicine 2011, 9:91doi:10.1186/1741-7015-9-91
Published: 28 July 2011

Abstract (provisional)

Background

ME/CFS or chronic fatigue syndrome (CFS) has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms. Attempts to estimate the burden of disease have been limited by selection bias, and by lack of diagnostic biomarkers and of agreed reproducible case definitions. We estimated the prevalence and incidence of ME/CFS in three regions in England, and discussed the implications of frequency statistics and the use of different case definitions for health and social care planning and for research.

Methods

We compared the clinical presentation, prevalence and incidence of ME/CFS based in a sample of 143,000 individuals aged 18 to 64 years, covered by primary care services in 3 regions of England. Case ascertainment involved: i) electronic search for chronic fatigue cases; ii) direct questioning of general practitioners (GPs) on cases not previously identified by the search; iii) clinical review of identified cases according to CDC-1994, Canadian and Epidemiological Case (ECD) Definitions. This enabled the identification of cases with high validity.

Results

The estimated minimum prevalence rate of ME/CFS was 0.2% for cases meeting any of the study case definitions, 0.19% for the CDC-1994 definition, 0.11% for the Canadian definition and 0.03% for the ECD. The overall estimated minimal yearly incidence was 0.015%. The highest rates were found in London and the lowest in East Yorkshire. All cases conforming to the Canadian criteria also met the CDC-1994 criteria but presented higher prevalence and severity of symptoms.
Conclusions

ME/CFS is not uncommon in England and represents a significant burden to patients and society. The number of people with chronic fatigue who do not meet specific criteria for ME/CFS is higher still. Both groups have high levels of need for service provision, including health and social care. We suggest combining the use of both the CDC-1994 and Canadian criteria for ascertainment of ME/CFS cases, alongside careful clinical phenotyping of study participants. This combination if used systematically will enable international comparisons, minimisation of bias, and the identification and investigation of distinct sub-groups of patients with possibly distinct aetiologies and pathophysiologies, standing a better chance of translation into effective specific treatments.

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