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

Abstract

BackgroundMyalgic encephalomyelitis/chronic fatigue syndrome (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.MethodsWe compared the clinical presentation, prevalence and incidence of ME/CFS based on a sample of 143,000 individuals aged 18 to 64 years, covered by primary care services in three regions of England. Case ascertainment involved: 1) electronic search for chronic fatigue cases; 2) direct questioning of general practitioners (GPs) on cases not previously identified by the search; and 3) clinical review of identified cases according to CDC-1994, Canadian and Epidemiological Case (ECD) Definitions. This enabled the identification of cases with high validity.ResultsThe 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 but one of the cases conforming to the Canadian criteria also met the CDC-1994 criteria, however presented higher prevalence and severity of symptoms.ConclusionsME/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, minimization 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.

Chronic fatigue syndrome (CFS) symptom-based phenotypes in two clinical cohorts of adult patients in the UK and The Netherlands

“…CFS imposes a huge burden on patients, carers and families (Horton et al, 2010, Nacul et al, 2011, Sabes-Figuera et al, 2010. In the UK, adults who attend NHS specialist CFS services have been ill for a median duration of 3 years, and half of those who were employed at the onset of their illness have ceased working (Collin et al, 2011).…”

Theory-Driven Models for Correcting Fight or Flight" Imbalance in Gulf War Illness"

“…Conversely conditions involving hypocortisolism may be more strongly related to sex steroid suppression of the HPA axis and promotion of HPG function, a configuration seemingly available only to female subjects. This would suggest that the hypocortisolism seen in diseases, such as CFS [54][55][56], may be a result of the complexity afforded to the interaction between the HPA and HPG in female subjects, and may be an explanation for the reported prevalence of such diseases in women [57][58][59][60][61][62]. Indeed, these authors report that approximately 70% of observed CFS patients are women.…”

T. Egeland og medarbeidere svarer:

“…Studier fra USA og England anslår forekomst til 0,2-0,4 % ved bruk av henholdsvis Canada-og Fukudakriteriene (5,73) . I USA er det påvist høyere forekomst blant minoriteter og i lavere sosioøkonomiske lag, men det er ukjent om dette er overførbart til Norge.…”