People with CFS often feel alone with their disease and with the everyday struggles this illness brings to their lives. The major objective of a CFS support group is to provide a warm and caring environment where the illness is not questioned and where patients are accepted. Knowing that others share this journey offers comfort and reassurance.

The Basics

A. Where to Meet

• Try to locate rent-free meeting space. Hospitals, libraries, churches and community centers sometimes allow groups to use their facilities at no charge.
• Consider accessibility to public transportation.

B. When to Meet 

• Carefully consider the time you choose to hold a meeting. CFIDS patients function better at different times of the day; some people still work while others require working family members or friends to transport them to the meeting. Some groups hold both daytime and evening meetings. 
• It’s helpful for meetings to have a set length. Meetings should be long enough to address the issues at hand, but not so long that it is difficult to sit through. 
• Most groups meet once a month, but depending on the needs of their group members, some meet more often (i.e. bi-weekly or weekly).

C. Program Structure

• Many groups choose a meeting format that alternates between discussion sessions and speaker sessions, thereby providing time for both sharing and educating. 
• Some groups focus on a specific issue such as the education of health care providers or the general public, pediatric CFIDS or emotional support of its members. The focus may change as the group evolves so it's important to continually evaluate the needs of the group as a whole. Be sure to include members whose participation may have declined as they can provide helpful feedback when determining how to best meet the needs of new and long-term members.

D. Meeting Etiquette

• Announce basic meeting guidelines at the beginning of each session as a reminder to regular attendees and new participants. 
• Never allow one person to monopolize the time. Meetings should provide an opportunity to share feelings and frustrations for all members.
• Remember that it is normal for things to move slowly in the first stages of your group’s formation. It is important not to go too fast. Let people get to know each other, enjoy each other and build trust within the group. 
• Because many CFIDS patients are chemically sensitive, hold fragrance-free meetings for your members.  

E. Getting the Word Out

• Newspapers often print small articles or free weekly or monthly listings to announce local meetings. Ask them to publish information on support group events in the Community Activities (or a similar) section of the paper. Be sure to note the meeting place, date, time and a phone number so interested people can call for more information. A note: If you include your phone number in any information, consider investing in an answering machine. Recording a message about your group and the next meeting will prevent you from repeating the same information to everyone who calls. If an answering machine is not available, consider rotating the number that is published. For example, the first week, the group leader's name and number would be listed and the second week, the co-leader's information will appear. This will relieve some of the burden of one person having to answer all the inquiry calls. It is also helpful to list the times the contact person is available to take calls. 
• Cable T.V. stations sometimes provide free listings on community bulletin boards. Also, radio stations will sometimes air short public service announcements. 
• Flyers often help attract participants when placed in doctors' offices, libraries,  pharmacies, health food stores and other common areas.

F. Meeting Expenses/Dues

• Many groups charge dues to cover general expenses such as copying, mailings, phone bills, etc. You will have to evaluate group expenses to determine a reasonable dues structure for your group. If you decide to ask for dues or contributions, start at the first meeting as it is more difficult to get people to contribute if they are used to the group leader taking care of everything. Too many groups disband because group leaders took responsibility for all of the group expenses until they could no longer afford to and then had to ask for donations and/or dues.  
• Some groups choose not to charge specific dues, but instead request contributions. Members of the support group should decide what expenses they are willing to support by making nominal contributions at each meeting. Most groups "pass the hat" so members can discreetly make contributions they can afford.

G. Sign-Up Sheets

• Have a sign-up sheet available at meetings, so you can maintain a list of current group members. Invite people to share their name, address, telephone number(s) and e-mail address. Distribute the roster, with permission of persons listed, so members can support each other between meetings.
• Ask people to note areas in which they might be able to offer assistance such as providing telephone coverage, supplying refreshments at meetings, coordinating speakers, participating in media/public relations interviews or Awareness Day/public policy activities.

H. Volunteers

• When requesting help from volunteers, set a time limit on the duty so it's not overwhelming. For instance, "Could you be the greeter at the January meeting?" You'll be more likely to get help if the length of the assignment is limited.
• If possible, have a back-up person available for key responsibilities.

I. Information Packets 

• New group members often find it helpful to receive an information packet prior to or at their first meeting. Information packets can also be good resources for family members, health care providers, the general public, and the media. Educational materials are available from the Association. Those published by the Association may be copied with acknowledgment including postal address ( PO Box 220398, Charlotte, NC 28222-0398 ); Web site (www.cfids.org) and/or Resource Line (704-365-2343). Others may require written permission from the publisher before information can be reproduced. 
• It is always appropriate to provide the Association's Resource Line (704-365-2343) and web site, www.cfids.org, to anyone interested in CFIDS. The CFIDS Association of America provides free information packets to all who inquire. A health care provider information packet is also available.
• Looking to educate a physician? The Association will send a free medical information packet to identified health care professionals. Send their name, mailing address (street, city, state, zip) and area of specialty to The CFIDS Association of America, Attn: Medinq, PO Box 220398, Charlotte NC 28222-0398; e-mail it to CFIDS@cfids.org; fax it to 704-365-9755; or call 704-365-2343.
• Know a health care provider interested in earning Continuing Education Credits? The CFIDS Association in collaboration with the Centers for Disease Control and Prevention (CDC) has developed “Chronic Fatigue Syndrome: Diagnosis & Management." This project is designed to teach health care providers how to better recognize and manage CFS.

J. Educational Materials

• A Manual for Group Leaders

• Frequently Asked Questions
• Pediatric CFS
• Support Group Awareness Activities