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

July 28, 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)


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.


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.


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.

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.

2 thoughts on “Research paper, ME/CFs prevalence in three regions of England, BMC Medicine, 28 July 2011”

  1. christine standing

    This looks like a step in the right direction. I note that the Abstract is provisional. Might it be strengthened by citing which WHO-ICD is being used? As soon as I see the terms ‘ME’ and ‘CFS’ I wonder what the authors really mean. That may be my lack, but given the superfluity of definitions in circulation, it might be wise to take that precaution in the service of clarity.


    Though provisional Christine I think that only relates to the format and not the content.

    I agree though I think this is an interesting paper and demonstrates how application of these existing criteria can refine patient cohorts.

    From a prevalence of 0.3-0.5% in 2003 Neuro Numbers for ‘Myalgic Encephalomyelitis’ in the UK (a figure used in the National Service Framework for LT Neuro Conditions in 2005-2015) – we now have potentially 0.2%.

    Rather diminishes claims of 250,000 sufferers in the UK somewhat doesn’t it? Imagine if that were applied to the world.

    Combining the CCC and CDC would seem to be a good idea and perhaps save using another new criteria at all.

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