Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members.
OBJECTIVE
To examine the benefits and problems of a chronic fatigue syndrome (CFS) and fibromyalgia (FM) support organization as reported by its participants.


METHODS
Active members (n = 32) and inactive members or dropouts (n = 135) of a regional support organization for people with CFS and FM completed a 26 item questionnaire by telephone interview or by self-completion and postal return.


RESULTS
The most frequently endorsed benefits of membership were illness legitimization (67.8%), finding out helpful new information (66.4%), and feeling understood by others (62.2%). Lower frequency endorsements were given to: helped to find (35.0%) or deal with (38.5%) doctors, and helped to improve my illness (36.4%). The most frequently reported reasons for dropping out were inconvenient location (37.8%) or time (37.0%), too much negative talk or complaining (33.3%), too sick to attend (28.8%), and illness or coping improvement (29.6% each). The active-member group showed significantly higher (p < 0.04) symptom severity scores and less illness improvement (p < 0.01) in comparison to the inactive/dropout group.


CONCLUSIONS
This cross-sectional study suggests that support groups for CFS are viewed as helpful by participants on a number of illness related issues. On the other hand, active members reported greater symptom severity and less illness improvement than inactive members or dropouts.
Friedberg
Fred
F
Department of Psychiatry, Stony Brook University, Stony Brook, New York 11794-8790, USA. fred.friedberg@stonybrook.edu
Leung
Debbie W
DW
Quick
Joyce
J
D000328:Adult; D003430:Cross-Sectional Studies; D015673:Fatigue Syndrome, Chronic / Q000503:physiopathology* / Q000523:psychology*; D005260:Female; D005356:Fibromyalgia / Q000503:physiopathology* / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D020377:Self Efficacy; D012657:Self-Help Groups / Q000592:standards*; D012720:Severity of Illness Index