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.

BackgroundThe Boston Carpal Tunnel Questionnaire (BCTQ) is a disease-specific measure of self-reported symptom severity and functional status. It is frequently used in the reporting of outcomes from trials into interventions for carpal tunnel syndrome. We conducted a systematic review of published studies on the psychometric properties of the BCTQ to determine the level of evidence on the instrument's validity, reliability and responsiveness to date.MethodsA search of the databases Medline, CINAHL, AMED and PsychInfo was conducted to retrieve studies which investigated one or more of the psychometric properties of the BCTQ. Data abstraction was undertaken by the first two authors.ResultsTen studies were retrieved which met the inclusion criteria. One study evaluated face and content validity (43 patients) eight studies assessed construct validity (932 patients), four studies tested reliability (126 patients) and nine studies assessed responsiveness (986 patients). Interpretability was evaluated in one study and acceptability in eight studies (978 patients).ConclusionThe BCTQ is a standardised, patient-based outcome measure of symptom severity and functional status in patients with carpal tunnel syndrome. The evidence base of the psychometric properties indicates that the BCTQ is a valid, reliable, responsive and acceptable instrument and should be included as a primary outcome measures in future CTS trials.

BackgroundDiagnosis of myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to clinical heterogeneity and a lack of reliable biomarkers for diagnosis and outcome measures. People with ME/CFS (PWME) often report high levels of disability, which are difficult to measure objectively. The well being of family members and those who care for PWME are also likely to be affected. This study aimed to investigate the functional status and well being of PWME and their lay carers, and to compare them with people with other chronic conditions.MethodsWe used a cross sectional design to study 170 people aged between 18 and 64 years with well characterized ME/CFS, and 44 carers, using SF-36 v2™. Mean physical and mental domains scores (scales and component summaries) were calculated and compared internally and externally with reference standards for the general population and for population groups with 10 chronic diseases.ResultsSF-36 scores in PWME were significantly reduced, especially within the physical domain (mean norm-based Physical Component Summary (PCS) score = 26.8), but also within the mental domain (mean norm-based score for Mental Component Summary (MCS) = 34.1). The lowest and highest scale scores were for "Role-Physical" (mean = 25.4) and "Mental Health" (mean = 36.7) respectively. All scores were in general lower than those for the general population and diseased-specific norms for other diseases. Carers of those with ME/CFS tended to have low scores in relation to population norms, particularly within the mental domain (mean = 45.4).ConclusionsME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS. We suggest the use of generic instruments such as SF-36, in combination of other objective outcome measurements, to describe patients and assess treatments.

BackgroundWe aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)MethodsWe carried out a systematic review of primary research and personal ('own') stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process.ResultsThirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for respect and empathy from service providers, 3) for positive attitudes and support from family and friends, 4) for information on CFS/ME, 5) to adjust views and priorities, 6) to develop strategies to manage impairments and activity limitations, and 7) to develop strategies to maintain/regain social participation.ConclusionsAlthough the studies were heterogeneous, there was consistent evidence that substantial support is needed to rebuild lives. Gaining support depends - most importantly - on the ability of providers of health and social care, colleagues, friends and relatives, and those providing educational and leisure services, to understand and respond to those needs.

Resumo ObjetivoInvestigar o efeito das desigualdades sociais nas taxas de cesariana em primíparas, com gravidez única e parto hospitalar. Métodos Estudo realizado no Estado do Rio Grande do Sul em 1996, 1998 e 2000. Foram utilizados dados do Sistema de Informação de Nascidos Vivos no cálculo das taxas anuais e das razões de chance de cesariana (RC) brutas e ajustadas para condições sociais (escolaridade e idade maternas, etnia/cor da pele e macro-regional de saúde), duração da gestação e número de consultas pré-natal. Resultados A taxa de cesarianas foi de 45%, e acima de 37% para todas as macro-regionais. As taxas aumentaram entre: mulheres de etnia indígena e negra, mulheres com mais de 30 anos, residentes nas macro-regiões Metropolitana, Vales e Serra, e com mais de seis consultas no pré-natal. Razões brutas e ajustadas indicaram taxas negativamente associadas para todas as categorias de etnia/cor, quando comparadas à cor branca da pele do recém-nascido, em especial para etnia indígena (RC aj =0,43; IC 95%: 0,31-0,59), positivamente associadas à escolaridade (RC aj =3,52; IC 95%: 3,11-3,99) e idade maternas mais elevadas (RC aj =6,87; IC 95%: 5,90-8,00), e maior número de consultas pré-natal (RC aj =2,16; IC 95%: 1,99-2,35). Os efeitos de idade e escolaridade mostraram estar parcialmente mediados pelo maior número de consultas pré-natal nas mulheres com idade e escolaridade mais elevadas. As taxas variaram entre as macroregionais, sendo maiores na região da Serra, economicamente mais rica. Conclusões Altas taxas de cesariana no sul do Brasil constituem problema de saúde pública e estão associadas a fatores sociais, econômicos e culturais, os quais podem levar ao mau-uso da tecnologia médica na atenção ao parto. Abstract ObjectiveTo investigate the effect of social inequalities in cesarean section rates among primiparae having single pregnancy and delivering in maternity hospitals.