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Support Groups: Group Activities

The primary goal for many CFIDS support groups is to help members "live" with CFIDS. How the group meets this goal is determined by many different influences such as the size of the group, how long the group has been in existence, composition of members (newly diagnosed vs. long-term sufferers) and group members' interests. Support groups should choose activities/projects that best serve its members, be it general support or activities with a specific focus.

Set Up a Telephone Help Line
Some groups maintain a Telephone Help Line, which allow CFIDS patients to receive support between meetings. Although this is an ambitious project, if it is planned well and monitored properly, it can be very beneficial to group members. This should be considered a group activity so include all members when making the decision to begin this project. If you decide to go for it…

  • One person should act as the Help Line coordinator and manage the volunteer schedule. 
  • Volunteers can be scheduled to staff a central telephone line at set hours on specific days or to receive calls at their homes either by using call forwarding from the group's phone number or by notifying callers of the volunteer's home number, using an answering machine or voice mail.
  • The support group's answering machine message should be kept current, providing the Help Line phone number, hours the Help Line is available and the volunteer's first name only.

Compile a Heath Care Professional Directory
Patients frequently ask "How can I find a doctor who knows about CFIDS?" Your support group can compile a list of health care professionals in your area who have diagnosed and treated members of the support group and other patients. A volunteer should be responsible for maintaining the list and making it available to patients and family members. For help in compiling a referral list, the Association publishes a brochure “ Choosing a Health Care Provider

Maintain a Lending Library
Many support groups allow members to borrow items from a lending library. To start a lending library, ask group members to contribute CFIDS or chronic illness-related items such as books, audio or videotapes, medical and media articles and past issues of The CFIDS Chronicle and The CFS Research Review .

Publish a Newsletter
Many CFIDS support groups publish a newsletter to communicate with members between meetings. Support group newsletters should be brief, as most patients prefer shorter, more frequent issues. Suggested contents include:

  • Support group meeting information, including dates, times, locations and topics for upcoming meetings
  • General CFIDS information
  • Local and national news regarding CFIDS and chronic illness, including summaries of meetings and conferences
  • Opportunities to become involved in advocacy and fund raising efforts
  • Articles written by health care professionals and patients that are of general interest to those with CFIDS (i.e., coping issues, treatment and research news, public policy activities)
  • Reviews and summaries of medical or media articles and other periodicals, books, audio tapes, pamphlets - including ordering information if applicable
  • Patient ads such as those looking for services, roommates, etc.
  • Local community resources with contact information when applicable
  • Humorous articles and cartoons

Participate in CFIDS Awareness Day
In 1993, the CFIDS community identified May 12th as a day to make the general public and government officials aware of the devastation caused by CFIDS. Your group can help continue this important awareness effort building by coordinating local Awareness Day activities.

Additional Information
The CFIDS Association of America publishes a Manual for Support Group Leaders. This resource for leaders and support group members provides additional information on the listed activities as well as others that may be better suited for your support group.