A National Assessment of the Service, Support, and Housing Preferences by Persons with Chronic Fatigue Syndrome

Abstract

Persons with Chronic Fatigue Syndrome (PWCs) completed and returned by mail a brief survey of open- and closed-ended items designed to assess their utilization and preferences for a variety of services. A total of 984 middle-aged adults diagnosed with Chronic Fatique Syndrome (CFS) from across North America returned the survey. During the past 12 months, many of these PWCs reported utilization of a primary care physician, gynecologist, CFS specialist, and self-help group to assist in their recovery from CFS. Most PWCs believed it was important to educate both health-care practitioners and the general public about CFS. In terms of their desire for specific recovery needs, factor analysis of responses indicated that these PWCs preferred self-help/social support services and general advocacy services in the treatment of their illness. The implications of these results for developing rehabilitation programs for PWCs are discussed.

Energy conservation/envelope theory interventions

“…In 1996, our research team distributed a brief survey of open- and closed-ended items for participants with ME/CFS designed to assess their utilization of and preference for a variety of services. [21] One preferred service involved a volunteer caregiver system to provide assistance with daily chores and errands. These data helped us set priorities for the subsequent development of a service program involving volunteer buddies to examine if it helped patients expending more energy than they had available to them.…”

“…[21] In collaboration with the Chicago Chronic Fatigue Syndrome Association, Shlaes and Jason [22] developed a program whereby people with ME/CFS received a volunteer buddy and a mentor who had ME/CFS. The buddy was an individual in the community who agreed to spend one hour a week conducting home visits with an individual with ME/CFS.…”

Feasibility of a home-based self-management program for chronic fatigue

“…Weeks 2-8: CD1 and CD2 (booklet chapters [5][6][7][8][9][10][11][12]. These assignments involved identification of unhelpful illness beliefs and practice of more useful cognitive and behavioral coping strategies.…”

The use of mixed methods in studying a chronic illness

“…In 1996, our research team distributed to patients a brief survey of open-ended items designed to assess their utilization, of and preference for, a variety of services (Jason, Ferrari, Taylor, Slavich & Stenzel, 1996). One preferred service involved a volunteer caregiver system to provide assistance with daily chores and errands.…”