YPWCs Made a
Difference at CFSICC Meeting
Originally published in Youth Allied By CFIDS,
On Wednesday, April 10, 1996, more
people turned out in support of persons with chronic fatigue and immune
dysfunction syndrome (CFIDS), and in particular, of children, adolescents and
young adults with the disease. They filled a large conference room at the
National Institutes of Health in Bethesda, Maryland and eagerly awaited the
foremost pediatric CFIDS event to date: the annual open meeting of a government
committee called the CFS ICC.
The CFS ICC is the Chronic Fatigue
Interagency Coordinating Committee. It is chaired by the President's Assistant
Secretary for Health, Dr. Philip Lee, and includes representatives from the
National Institutes of Health (NIH), the Centers for Disease Control and
Prevention (CDC), the Food and Drug Administration (FDA), the Social Security
Administration (SSA) and a private research institution. It also includes
patient advocates, such as Kim Kenney (executive director of The CFIDS
Association of America and one of the staff members who helps with CYA).
With the rare opportunity of the CFS
planning to focus on pediatric CFIDS during this meeting, Rebecca Moore and
other members of the Youth Advisory Committee (YAC) and the Association's staff
prepared for the event all winter long. We turned to members of CYA and The
CFIDS Association of America and to the community of young persons with CFIDS
(YPWCs) for help, and many responded! Our letter campaign to Dr. Lee was a huge
success. Word about the meeting spread throughout the CFIDS community and on the
Internet list for YPWCs, and we soon began to hear from youth, parents and other
dedicated supporters who were willing to travel from as far as California to
attend the meeting. They wanted to make certain that we not only made an
impression on the committee, but left having made substantial progress towards
increasing support for pediatric CFIDS research.
Rebecca and Kim prepared to present
public policy requests to the CFS ICC, outlining a strategy to help researchers
and doctors better understand pediatric CFIDS. Youth and parents worked
feverishly on their testimony for the meeting and on letters to Dr. Lee. Travel
plans were set, last-minute e-mails and phone calls were exchanged and a massive
supply of blue ribbons was packed. And then there we were, at the National
Institutes of Health, ready to share our stories, concerns and requests with our
government's CFIDS researchers.
Want to know what happened? Keep reading.
inside a glimpse into the heart of the meeting - the excitement, anguish,
advocacy and most of all, the dedication and support exhibited by those who were
not only there in person, but also in spirit.