Patients Spread the Word on
By Renée Brehio
Chronic fatigue and immune dysfunction syndrome (CFIDS) patients worldwide took the
educate the general public, family, friends, legislators and medical practitioners about the illness on
May 12, 2001, International CFIDS/ME Awareness Day.
Awareness activities all shared the goal of gaining more respect and attention for an
medical condition. Following is a sampling of the many efforts by support groups and persons with CFIDS
(PWCs) to spread the word about the illness.
The Central Florida CFIDS Support Group distributed Awareness Day literature
to Dr. Dean Edell, a physician and media personality who has publicly expressed the view that CFIDS is
not a real illness. Several medical students sat in on the group’s Awareness Day planning meeting and
wrote letters on their behalf to local Congressmen.
The CFS/CFIDS/FM Support Group of Macon, Ga., posted a bulletin board
display at The
Coliseum Medical Center. A member of the group also convinced The Macon Telegraph to run a story on CFIDS
that featured three PWCs’ experiences with the illness.
Barbara Erwin of the Delaware County, Pa., CFIDS Support Group sent
letters to elected
officials and government agencies asking for increased funding for research, examination of ERISA laws
and disability insurance carriers’ practices regarding CFIDS. She also called for greater education for
Social Security Administration employees, health care providers and educators dealing with the illness.
The Gig Harbor, Wash., CFIDS and Fibromyalgia (FM) Support Group sponsored
booth at a health fair and passed out buttons with the words, "Ask Me About CFIDS or FMS."
The Greensboro CFIDS/ME/FMS/MCS Support Group in Greensboro, N.C.,
Michael Easley’s proclamation of May 7-13, 2001 as state "CFIDS/ME Awareness Week." The group put the
official proclamation in their newsletter and in church bulletins for free publicity.
The Las Vegas FM/CFS Support Group and the Lupus Foundation of Southern
a seminar, "Is Your Environment Making You Sick?" The group also presented an award to a local journalist
for educating the community about CFIDS and FM.
The Roseville Maidu Community Center FM/Chronic Fatigue/Arthritis/Chronic Pain
Sacramento, Calif., sponsored a display at a local shopping mall and several health fairs, held their
second annual community caregiver conference and organized a 5K/10K Run Against Pain.
Anita Jones of Houston, Texas, encouraged employees at local businesses
and city council
members’ offices to wear blue ribbons in honor of CFIDS patients during the month of May. She also obtained
proclamations from the governor of Texas and the mayor of Houston.
Kay Ferguson of Ft. Myers, Fla., worked with a local television station
to get CFIDS
included in their health coverage. She also wrote her county commissioner and mayor and educated several
friends about the illness.
Joy Roggli of Winchester, Tenn., had previously found her local newspaper
to run an article about CFIDS, so she wrote a letter to the editor about the illness that got published.
She also wrote letters to her Congressmen and gave other PWCs suggestions for things they could do to
commemorate Awareness Day.
Renée Brehio is the Director of Communications for The CFIDS Association of America.