Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome

Abstract

Objectives The objective of this study was to examine individuals with myalgic encephalomyelitis and chronic fatigue syndrome who are confined to their homes due to severe symptomatology. The existing literature fails to address differences between this group, and less severe, nonhousebound patient populations. Methods Participants completed the DePaul Symptom Questionnaire, a measure of myalgic encephalomyelitis and chronic fatigue syndrome symptomology, and the SF-36, a measure of health impact on physical/mental functioning. ANOVAs and, where appropriate, MANCOVAS were used to compare housebound and nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome across areas of functioning, symptomatology, and illness onset characteristics. Results Findings indicated that the housebound group represented one quarter of the sample, and were significantly more impaired with regards to physical functioning, bodily pain, vitality, social functioning, fatigue, postexertional malaise, sleep, pain, neurocognitive, autonomic, neuroendocrine, and immune functioning compared to individuals who were not housebound. Discussion Findings indicated that housebound patients have more impairment on functional and symptom outcomes compared to those who were not housebound. Understanding the differences between housebound and not housebound groups holds implications for physicians and researchers as they develop interventions intended for patients who are most severely affected by this chronic illness.

Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome

“…Almost half of this sample (48.2%, n = 27) was bedbound; 37.5% (n = 21) were homebound; 7.1% (n = 4) could work part-time; 7.1% (n = 4) could work full-time. This indicates that the current sample was more impaired than the general population of patients with ME or CFS, as several studies suggest that about 25% of patients are bedbound [6,7]. Additionally, 96.2% of the deceased were under the care of a medical professional at the time of death.…”

“…Additionally, this is a very impaired group of patients. Almost half of the patients reported on in this sample were bedbound, which is twice the rate found in prior literature [6,7]. However, it is possible the earlier mortality is related to illness severity and functional status.…”

“…Although many case definitions exist, ME and CFS are characterized by a variety of symptoms including post-exertional malaise; neurocognitive impairment; sleep dysfunction; and immunological, autonomic, and gastrointestinal issues [2–5]. Most patients with ME and CFS experience functional impairment that prevents them from completing normal daily activities, with approximately 25% of patients housebound at any given time [6,7]. However, few studies have examined whether ME and CFS increases the risk of mortality in patients, and the studies that have reported conflicting results[8].…”

Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome

“…Patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have severe and debilitating symptoms including postexertional malaise, dysfunctional sleep, and neurocognitive impairments (Fukuda et al., ; Ramsay, ), and 25% of patients are housebound (Pendergrast et al., ). It is estimated that approximately one million adults are affected by ME and CFS in the United States alone (Jason et al., ).…”

Clinical criteria versus a possible research case definition in chronic fatigue syndrome/myalgic encephalomyelitis

“…Of the few investigations that have focused on this group of patients, most had small sample sizes or investigated patients across multiple illnesses [20–22]. However, one previous study with an adequate sample size did compare patients with CFS who were housebound versus those who were not housebound [23]. Findings indicated that those who were housebound have more impairment on functional and symptom severity outcomes.…”