Add Your Voice to Empower YPWCs
By Rebecca C.
Originally published in Youth Allied By CFIDS, Winter
I hope that this edition of Youth
By CFIDS will inspire, excite and encourage you with the stories of young
persons with CFIDS (YPWCs) who have not only seen the struggles of their peers,
but have resolved to do something about them.
CFIDS Youth Alliance is comprised of
dedicated youth with CFIDS (and their family members and supporters). But for
CYA to accomplish its objectives it will have to become a wide-ranging,
"grassroots" organization which depends upon the involvement of YPWCs. It's
true; progress in the areas of access to medical care, equal education and other
crucial areas of interest to YPWCs will likely depend on your determination to
advocate for yourself and other youth with this disease.
But what is
making certain that government officials know that children and young adults get
CFIDS and that YPWCs may need special help from schools to get an education.
Advocacy is telling our government about the dire need for pediatric CFIDS
research and a cure. Studies especially need to be done on the prevalence (the
number of youth with CFIDS), diagnosis and treatment of YPWCs. Advocacy is
informing the public about pediatric CFIDS and how individuals can help.
Advocacy is fighting for yourself and for every other person with this
Two of CYA's goals are to empower youth
through CFIDS advocacy and education and to increase awareness of pediatric
CFIDS. Sometimes building awareness means informing pediatricians and educators,
but it also involves communicating with government officials and working to
persuade them to join and assist our efforts.
To be an effective advocate for YPWCs,
must not only request that the government and private sector enact new policies
or laws and provide funds for pediatric CFIDS research, but it must also
demonstrate the need for these requests. This is most easily and effectively
done with letters, phone calls and visits from youth.
Our objectives for the coming years
ambitious. We would like to see constructive action following the CFS
Interagency Coordinating Committee's April 1996 meeting about pediatric CFIDS.
We want state laws passed that will ensure that YPWCs have an equal opportunity
for education. And we want every branch of the federal government - Congress,
the Judiciary, the Cabinet and the White House - to know about you and your
struggles. All of these objectives have the potential to improve YPWCs' lives
someday, but without your help, our requests will not be heard.
Your involvement in CYA and its advocacy
campaigns will enable us to say: not only is pediatric CFIDS a huge problem, but
CYA - an organization run mainly by youth with CFIDS - is doing something
about it. The image of children, teens and young adults working together to
combat a devastating illness is a powerful one which can overcome many
stereotypes about persons with this disease. When we are perceived for what we
truly are, youth living in spite of illness and fighting to see good come out of
our frustrating situations, our requests are less likely to be refused, and
people are more likely to aid us in our fight.
But the number of youth active in CYA
YPWC advocacy is still in-credibly small compared to the number of youth with
CFIDS. YPWCs' struggles constantly remind me that we can't remain silent when we
have so many difficulties to overcome and so many people to reach. We need to
unite as a community, each person doing as much (or as little) as she or he can.
I am encouraged by the efforts of those
YPWCs already contributing in their own special ways to CYA, whether by writing
for the newsletter, starting a YPWC support group, educating doctors or
organizing a project. They reinforce my hope for a better future and compel me
to reiterate my message to you: Please add your voice to mine and those of other
YPWCs. Together we will send a strong message to Washington, the medical
community, educators and the community at large.
To participate in CFIDS advocacy efforts,
The CFIDS Association of America's
CFIDS free advocacy group.