Grassroots: Support Group Awareness Activities
Since 1993, each May 12th has been recognized as International CFIDS/CFS
Awareness Day. Awareness Day events carried out by patients and CFS
organizations seek to educate the general public, members of legislative bodies,
the media and health care professionals, about this prevalent and debilitating illness.
Holding events on a single day raises the profile of individual efforts and
focuses attention, on the illness on this national public health concern.
CFIDS awareness is particularly important during the month of May, there are
many activities that support groups can do to educate others throughout the
year. By helping to increase awareness, support groups are bringing about change
in the lives of all people with CFS. One advocate said it best by stating, "I
learned how very important it is that we all speak up and do our part, no matter
What can your group
- Designate one or more members of your group as the
advocacy point person. Register this person for the
Grassroots Action Center Listserv
program so he or she
can receive the latest advocacy and media information from the CFIDS Association of
America and share it with other group members.
Organize a support
group member project to educate your government officials. Take copies of an
advocacy letter to a support group meeting and have members write
letters to their two Senators and one Representative in
Congress. Include the Association's
reporters at your local TV and radio stations, newspapers, and magazines
regarding CFIDS. Once you have a reporter interested in doing a story on
their name and address to the Association
and request an information packet be sent to them.
- Conduct a "tell a
friend" campaign by asking support group members to pledge to educate at least
three people unfamiliar with CFS about the illness and its impact on daily
Association's CFS Fact Sheet
libraries, pharmacies, grocery stores, churches, health food stores and
medical facilities. Consider asking local youth groups to help deliver them.
on CFS to church, women's, civic, school and youth groups. To help conserve
your energy, ask a local health care practitioner, friend or family member
knowledgeable about CFS to give the presentation with or for you.
opportunities to partner with other local health groups, such as the Arthritis
Foundation or Independent Living Centers, to spread the word about CFS and
Ask health care
providers to display information about CFS. Don't forget other health care
professionals such as your dentist, optometrist and massage therapist.
Create a simple
public service announcement (PSA) and send it to local publications and radio
stations. You may be able to find a local graphic designer willing to
creatively format your text at no charge.
The CFIDS Association can provide you with sample PSAs.
Interested in May 12th Activities?
CFS Awareness Day activities grows
every year as more support groups and organizations team together. The
activities listed above can be used year round, as well on May 12th. Listed
below are additional suggestions for activities focused on Awareness Day.
- Prior to May 12th,
have a state, county or city CFS Awareness Day
- Set up a display at
your local library. The librarian can do this with your suggestions on what
information should be included in the display. The Association has several
brochures suitable for these types of displays. You can also include the
CFS Fact Sheet
. Please remember, this display does not need to
be "manned" by someone from your group.
members of your support group can manage some time at the mall, you may wish to set up a
- Consider asking your place of worship to include a notice about
the significance of May 12th in its worship material.
- Consider sending a
member of your support group to the Association's CFS Lobby
Days on Capitol
Hill. (held this year September 17-18)
You don't have to do
all of these things! Please DO ask members of your support group to write at
least one letter to their Congressperson. Then if your group is up to it, choose one of the other suggestions listed
above (or come up with something new!) that you believe you are best able to
accomplish. Let us know what you are doing to make others more aware of CFS.
Send your plans (and pictures) to The CFIDS Association of America, Attention
Awareness Day, PO Box 220398, Charlotte, NC 28222-0398.