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- Last Updated: 06 December 2015 06 December 2015
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by Nancy B. Smith
(This is a very helpful article on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) support groups and how they can meet the needs of patients and their families. Anyone in a support group, looking for a group, or support group leaders will benefit from reading Nancy's thoughtful article.—Ed.)
There are many reasons support groups exist. They also have different styles and formats.
Support groups exist so that people can reach out to each other and not feel so isolated. They are there to exchange medical and support information, and to keep patients active and encouraged.
What many patients have not had is the luxury of thinking about the purpose, format and leadership style of the group, and whether these factors are suited to them.
Many leaders are gradually recruited into the role or inherit the role from a previous leader. They too, have to ask themselves important questions to help the group thrive and to thrive themselves.
Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.