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Spring 2000

Support Network
Support Groups -- An Important Resource

By Kris Hopkins

Do you remember where you first found empathy and answers to your questions about chronic fatigue and immune dysfunction syndrome (CFIDS)? For many patients and family members, the answer is a CFIDS support group.

A study published in the February 2000 issue of American Psychologist notes that participation in self-help groups, both on-line and face-to-face, is becoming more popular than ever. According to the authors, patients are turning to support groups because "the seriousness of their conditions, the weight of their illness' impact and the degree of readjustment required under the circumstances set them apart from their immediate social setting and propelled them toward others who have been similarly marked."

CFIDS/CFS groups were listed as the most active self-help groups on the Internet. The study's authors attribute this to the patients' physical limitations, which make getting together for face-to-face meetings difficult or impossible. For many patients, the confidentiality and educational opportunities offered by this type of support are also important factors.

How to find a support group
The CFIDS Association of America maintains a state-by-state listing of CFIDS support groups. A list of groups in a person's immediate area will be provided free of charge to anyone requesting this information. To receive a list of support groups in your area, please send a self-addressed, stamped envelope to The CFIDS Association of America, Attn: Support Group Info, PO Box 220398, Charlotte, NC 28222-0398. You can also send an e-mail to cfids@cfids.org or call the Resource Line at 704/365-2343.

Although the Association tries to maintain comprehensive information, there are many support groups that are not on our lists. If you are looking for a support group in your area, local newspapers and community service publications often print information about support groups. Some churches also keep lists of support groups which are utilized by their members. Another resource for information on support groups would be physicians. If they see other CFIDS patients, they may be aware of existing support groups in the local area.

Finding help where you need it
Living with CFIDS is often difficult, not only because of the physical symptoms, but also because of the misunderstanding of the illness by family members, co-workers, health care professionals and friends. It's important that patients seek out support and comfort from others who are dealing with the same experience. For some this may come from meeting face-to-face with other CFIDS patients, and for others it comes from sharing their thoughts and feelings with members of an on-line support group. Whichever group you choose to become a part of, we encourage to you to utilize this resource as you learn to live with CFIDS.

CSN: Helping support group leaders help their members
To unify efforts among support group leaders to beat CFIDS and related disorders, The CFIDS Association of America, with the help of existing CFIDS support group leaders, developed The CFIDS Support Network of America (CSN) in 1994. CSN is an organization of support group members who provide groups and their leaders with the foundation they need to be successful in their main objective-to conquer CFIDS. Support group leaders join together to strengthen their efforts, share with each other and learn from each other. For more information, please send your name and mailing address to: The CFIDS Association of America, Attn: CSN Membership, PO Box 220398, Charlotte, NC 28222-0398 or e-mail your information to CSN@cfids.org.

Kris Hopkins is the Support Network Services Director for The CFIDS Association of America.