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Retrospective, narrative accounts of illness experience in chronic fatigue syndrome provide the empirical basis for a preliminary conceptual model of social course in chronic illness. Qualities of distress interact with culturally specific expectations for social life and personal conduct to trigger microsocial processes of marginalization: role constriction, delegitimation, impoverishment, and social isolation. Marginalizing processes are opposed by acts of resistance initiated by ill individuals and directed toward integration in social worlds. Social distance from the perceived centers of CFS sufferers' interpersonal worlds expands and contracts with the changing predominance of marginalizing and resisting influences over time. Social course thus consists of successive, bi-directional movements along a 'continuum of marginality' by persons living lives with chronic illness.

Objective: This study examines social processes that construct the course of chronic illness. Specifically, it identifies and describes mechanisms that constitute the process of role constriction in employment for individuals with chronic illness., Method: Sixty-six persons meeting the Centers for Disease Control case definition of chronic fatigue syndrome (CFS) participated in a longitudinal study involving three waves of data collection over 3 years. Qualitative and quantitative methods were combined in the research, which included face-to-face semistructured interviews, telephone interviews, and self-report questionnaires. Materials presented in this study are drawn principally from the Year 1 face-to-face and telephone interviews., Results: When patterns of symptoms and of the illness course in CFS intersect with work requirements, they impede performance and place ill individuals at risk for job loss. Persons with CFS devise and implement specific strategies to resist role constriction and remain in the work force., Conclusions: Role constriction is a social process of marginalization in chronic illness. Opposing forces of marginalization and resistance define the social course in chronic illness and suggest that chronicity can be thought of as a marginalized position in social space.

Purpose: To measure the functional status and well-being of patients with chronic fatigue syndrome (CFS), and compare them with those of a general population group and six disease comparison groups., Patients and Methods: The subjects of the study were patients with CFS (n = 223) from a CFS clinic, a population-based control sample (n = 2,474), and disease comparison groups with hypertension (n = 2,089), congestive heart failure (n = 216), type II diabetes mellitus (n = 163), acute myocardial infarction (n = 107), multiple sclerosis (n = 25), and depression (n = 502). We measured functional status and well-being using the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), which is a self-administered questionnaire in which lower scores are indicative of greater impairment., Results: Patients with CFS had far lower mean scores than the general population control subjects on all eight SF-36 scales. They also scored significantly lower than patients in all the disease comparison groups other than depression on virtually all the scales. When compared with patients with depression, they scored significantly lower on all the scales except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher. The two SF-36 scales reflecting mental health were not correlated with any of the symptoms of CFS except for irritability and depression., Conclusion: Patients with CFS had marked impairment, in comparison with the general population and disease comparison groups. Moreover, the degree and pattern of impairment was different from that seen in patients with depression.

Background: Our goals were to determine the prevalence of unusual, debilitating fatigue and the frequency with which it was associated with the chronic fatigue syndrome (CFS) or other physical or psychological illness in an outpatient clinic population., Methods: We prospectively evaluated a cohort of 1000 consecutive patients in a primary care clinic in an urban, hospital-based general medicine practice. The study protocol included a detailed history, physical examination, and laboratory and psychiatric testing., Results: Five patients who came because of CFS studies were excluded. Of the remaining 995, 323 reported fatigue, and 271 (27%) complained of at least 6 months of unusual fatigue that interfered with their daily lives. Of the 271, self-report or record review revealed a medical or psychiatric condition that could have explained the fatigue in 186 (69%). Thus, 85 (8.5%) of 995 patients had a debilitating fatigue of at least 6 months' duration, without apparent cause. Of these patients, 48 refused further evaluation, and 11 were unavailable for follow-up; 26 completed the protocol. Three of the 26 were hypothyroid, and one had a major psychiatric disorder. Of the remaining 22 patients, three met Centers for Disease Control and Prevention criteria for CFS, four met British criteria, and 10 met the Australian case definition. The point prevalences of CFS were thus 0.3% (95% confidence interval [CI], 0% to 0.6%), 0.4% (95% CI, 0% to 0.8%), and 1.0% (95% CI, 0.4% to 1.6%) using the Centers for Disease Control and Prevention, British, and Australian case definitions, respectively. These estimates were conservative, because they assumed that none of the patients who refused evaluation or were unavailable for follow-up would meet criteria for CFS., Conclusions: While chronic, debilitating fatigue is common in medical outpatients, CFS is relatively uncommon. Prevalence depends substantially on the case definition used.

An anthropological view of chronic fatigue syndrome places the study of illness in social context. Data from an interview study of 50 chronically fatigued patients demonstrate the relation of local social worlds--families, workplaces, communities--to the meaning and experience of illness. Negative life events and difficulties, multiple commitments, and a hectic pace are among prominent themes in the subjects' local worlds. These themes are reflected in: (1) attributions of illness onset to social sources, (2) the symbolism of the core complaint of fatigue, and (3) an illness-induced, positively valued lifestyle transformation suggesting the rejection of culturally prescribed 'busyness'. Dichotomous definitions of the relation of mind and body are shown to be part of culture, not Nature, in the paper's second section. The 'mind-body dichotomy' and the differing values attached to physical and psychological disorders by a naturalistic scientific paradigm explain the delegitimizing experiences of sufferers, who find their illness dismissed as psychosomatic and therefore 'not real'. A conceptualization of chronic fatigue syndrome which links local social worlds to psychological distress, felt bodily sensation and biological changes is proposed. Collaborative teams of social scientists and medical researchers might fruitfully pursue aspects of social context in relation to psychiatric, immunological and viral dimensions of the illness.

An anthropological view of culture and somatic experience is presented through elaboration of the notion that illness has a social course. Contemporary anthropology locates culture in local worlds of interpersonal experience. The flow of events and processes in these local worlds influences the waxing and waning of symptoms in a dialetic involving body and society over time. Conversely, symptoms serve as a medium for the negotiation of interpersonal experience, forming a series of illness-related changes in sufferers' local worlds. Thus, somatic experience is both created by and creates culture throughout the social course of illness. Findings from empirical research on neurasthenia in China, and chronic fatigue syndrome (CFS) in the United States, corroborate this formulation. Attributions of illness onset to social sources, the symbolic linking of symptoms to life context, and the alleviation of distress with improvement in circumstances point to the sociosomatic mediation of sickness. Transformations occasioned by illness in the lives of neurasthenic and CFS patients confirm the significance of bodily distress as a vehicle for the negotiation of change in interpersonal worlds. An indication of some of the challenges anthropological thinking poses for psychosomatic medicine concludes the discussion.