~) Pergamon 027%9536(95)00124-7 Soc. Sci. Med. Vol. 41, No. 10, pp. 1367-1372, 1995 Copyright© 1995 Elsevier ScienceLtd Printed in Great Britain.All rights reserved 0277-9536/95 $9.50 + 0.00 QUALITY OF LIFE IN CHRONIC FATIGUE SYNDROME ROBERT SCHWEITZER,* BRIAN KELLY, AMANDA FORAN, DEBORAH TERRY and JOHN WHITING Queensland University of Technology, Locked Bag No. 2, Red Hill, QId 4059, Australia Abstract--Whilst the debilitating fatigue experienced in patients suffering from Chronic Fatigue Syndrome (CFS) results in a subjective marked impairment in functioning, little research has investigated the impact of this disorder on quality of life. Forty-seven subjects with a confirmed diagnosis of CFS and 30 healthy controls were compared using the Sickness Impact Profile (SIP). A subgroup of subjects were interviewed regarding the impact CFS has had on their social and family relationships, work and recreational activities, Results from both the SIP and the interview revealed that CFS subjects had significantly impaired quality of life, especially in areas of social functioning. These findings highlight the importance of addressing the social isolation and loss of role functioning experienced by CFS sufferers. Key words--chronic fatigue syndrome, well-being, myalgic encephalomyelitis, ME Chronic fatigue syndrome (CFS) is a relatively new name for what has been variously termed in the past, myalgic encephalomyelitis (ME) [1], neuromyasthenia [2] and chronic Epstein-Barr virus infection [3]. More commonly within popular literature, CFS has also been referred to as the 'yuppie plague' or 'yuppie flu' [4]. The central defining characteristic of CFS is debilitating fatigue, being precipitated by only minimal physical activity. Aetiological theories have vacillated between CFS being an as yet unidentified physiological disorder, possibly caused by viral infection [5], and CFS being the result of psychological dysfunction [6]. In the preoccupation with a search for causes, there has been an almost total neglect in research concerning the quality of life of patients suffering from CFS. The current situation is instead "dominated by the harmful and non productive dichotomization between physical (labelled as 'real') and psychological (labelled as 'unreal') illnesses, and a clear commitment to emphasizing the organic dimensions of the syndrome" [7]. As a result, the impact of this disorder on more subjective dimensions of everyday functioning has been largely overlooked. Quality of life has been broadly referred to in the past by such terms as 'well-being' [8], 'functional status' [9], 'health status' [10] and 'life satisfaction' [11]. These variety of terms and measurements serves to highlight the lack of agreement within the literature regarding how quality of life should be defined and, indeed, exactly what 'quality of life' is [12, 13]. Measurements in the field have ranged from an assessment of physical activity and social activity to *Author for correspondence. employment, housing, loss of income, self-esteem, sexual activity and even to incontinence [14]. The quality of life approach in particular views illness as impacting upon the patient's everyday physical, psychological and social functioning. Whilst in practice it is difficult to separate these dimensions, the patient's 'physical' reality refers to such phenomenon as their general physical state and ability for self-care; 'psychological' to the presence of emotional distress; and 'social' or more accurately, social role functioning, to the patient's relationships with friends and family, parenting, homemaking, occupational functioning and participation in rec- reational activities. Quality of life measurements are useful not only in documenting the impact of illness, but in their potential to contribute to the improvement of patient welfare. As with most chronic illnesses, the realistic and immediate aim of CFS sufferers, rather than being treatment and cure, is a reduction in the impact of illness on everyday physical, psychological and/or social functioning [15]. Further exploration and clarification of the specific problems associated with the quality of life in patients with these disorders should prove beneficial to the understanding and management of this syndrome. The present research is an exploratory study which aims to examine the impact of CFS on patients' every- day physical, psychological and social functioning. It is hypothesized that patients with CFS will differ from a healthy control group on these three dimensions of quality of life. From this investigation it is expected that various negative consequences of CFS contribut- ing to a reduction in quality of life will be identified, and their potential for intervention highlighted. 1367