Support Groups: Starting Groups
People with CFIDS often feel alone with their disease and with
the everyday struggles this illness brings to their lives. The major objective
of a CFIDS 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.
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
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
Itís 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
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
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 groupís 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
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
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.
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
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 (
); Web site
(www.cfids.org) and/or Resource Line (704-365-2343). Others may require
written permission from the publisher before information can be
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
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
NC 28222-0398; e-mail it to
; 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
Fatigue Syndrome: Diagnosis & Management."
This project is designed to teach health care
to better recognize and manage CFS.
J. Educational Materials
K. Related Information