محصور شدن در خانه با سندرم خستگی مزمن: مقایسه چند بعدی با بیماران سرپایی

Many patients with chronic fatigue syndrome (CFS) seem to experience periods in which they are homebound due to their symptomatology. Despite a growing body of research about CFS, little is known about patients who no longer feel able to leave their homes. The purpose of the present study was to examine whether homebound patients differ from other CFS patients on illness-specific characteristics. Besides experiencing more impairment in daily functioning than participants of an outpatient intervention study, homebound patients were characterised by extremely high levels of daily fatigue, predominant somatic attributions, and pervasively passive activity patterns. The course of symptomatology was similarly stable in both groups. Our findings suggest that homebound patients form a distinct subgroup of CFS patients who might profit from a treatment approach that is tailored to their specific needs. The exploratory nature of this first systematic investigation of homebound CFS patients is stressed, and suggestions for future research are made.

Chronic fatigue syndrome (CFS) is characterised by a severe and disabling fatigue that persists for at least 6 months and is not the result of a medical condition (Fukuda et al., 1994). CFS can dominate patients' lives to such a degree that they feel no longer able to leave their homes. According to surveys conducted by patient organisations, many patients with CFS seem to have experienced a period in which they were bound to their homes due to symptomatology (e.g. Action for M.E., 2001). Unfortunately, virtually all scientific effort has been concentrated on CFS patients who were able to visit outpatient treatment settings. Thus, little is known about the illness-specific characteristics of homebound CFS patients. More insight into these characteristics will enhance the understanding of the complex nature of CFS and may also contribute to the development of specifically tailored treatment approaches. The purpose of the present study was to determine whether homebound patients differ from other CFS patients on illness-specific characteristics. For this purpose, we compared a group of homebound patients with the natural course condition of an outpatient intervention study, previously conducted to test the effect of cognitive behaviour therapy for CFS (Prins et al., 2001). The two groups were compared on multiple illness-specific dimensions, validated for the clinical evaluation of patients with medically unexplained fatigue (Vercoulen et al., 1994). Besides the assessment of fatigue, impairment and additional complaints such as concentration problems, unrefreshing sleep and deterioration in psychological well-being, those factors were assessed that have been shown to inflate and prolong symptomatology in CFS (Vercoulen et al., 1994 and Vercoulen et al., 1998). These perpetuating factors have received much attention, both in research and cognitive behaviour therapy for CFS (Prins et al., 2006). Prominent factors are physical inactivity, caused by the idea that the complaints are due to a somatic cause, and an experienced lack of control over the symptoms. We hypothesised that the scores on these factors are more problematic in homebound patients than in outpatients, leading to more severe fatigue and impairment. Earlier research has shown that spontaneous recovery in CFS is rare (for a systematic review, see Cairns and Hotopf, 2005). No specific findings exist about the course of CFS in homebound patients. We therefore reassessed the severity of fatigue and impairment at 1-year follow-up and tested whether the course of symptomatology in homebound patients differs from that of outpatients.