Having My Say
By Sandy E.
Youth Allied By CFIDS, Spring 1996
As a young
person with CFIDS, I am well aware of my ability to influence the thinking of
the general public in a positive way. When people hear about a kid or young
adult having serious health problems they tend to listen, and I take advantage
of that whenever possible - raising awareness that I hope will benefit all PWCs.
For the first couple of years I was
was too ill to participate in or initiate any major advocacy projects. But I
wrote letters to government leaders on a regular basis. I also looked out for
erroneous reports about CFIDS on TV, on the radio or in printed publications,
and I wrote letters to correct the misinformation.
When my health stabilized a bit, I
more willing and able to share my story for advocacy purposes on a larger scale.
For Michigan CFIDS Awareness Month in March 1994, I wrote an essay telling my
story and encouraging others to spread the word that CFIDS is real and
debilitating. My essay was printed in The Ann Arbor News, and a portion of it
was also printed in a newspaper in a neighboring county. In May 1994 I organized
a letter-writing campaign. I asked members of the local support group to write
one-page letters about themselves and attach photos to them. I added a cover
page which said, "May 12th, 1994 is International Chronic Fatigue Immune
Dysfunction Syndrome Awareness Day. The members of the CFIDS Support Group of
Ann Arbor, Michigan want you to become more aware. Look at our faces and read
our words." I sent everything in a big envelope to the White House. I also
e-mailed the White House on May 12th. In June, we received a reply from
In March 1995, my support group distributed
flyers and put up posters all over southeast Michigan (with help from several
healthy volunteers). In support of our efforts, one of the local bookstores
offered to set up a display of CFIDS books in honor of Awareness Month.
In late April 1995, I received a call
The Ann Arbor News in response to a letter I had sent more than two months
earlier. The reporter wanted to do a story about me just prior to May 12th. So,
on May 7th (in the huge, widely circulated Sunday edition!), an article about me
and a photo was published on the front page of the Local section of The Ann
Arbor News. The headline read, "Young woman able to rise to the challenge of a
I hope to focus my efforts in 1996
areas: 1) Getting accurate CFIDS reports on the big TV network affiliates in
Detroit; 2) Writing to the Congresspeople in charge of making decisions about
health issues and research funding; and 3) Distributing CFIDS pamphlets to local
schools and pediatric clinics. I will also continue to write articles for my
local newspaper, as those have generated a great deal of interest and support.
Other PWCs contact me to say how glad they are to know that someone out there
really does understand. Healthy folks contact me to say that I am in their
thoughts and prayers, and they hope I feel better soon. The tremendous amount of
positive response I receive from all these advocacy efforts always motivates me