Lee Responds to Our Letters
By Rebecca C.
Originally published in Youth Allied By CFIDS,
original article about this campaign
In April, I testified before the CFS
Interagency Coordinating Committee (CFSICC) and presented 83 letters from YPWCs,
family members and supporters to be given to committee chairman, Assistant
Secretary for Health Dr. Philip Lee.
Kim Kenney, Executive Director of The
Association of America, and I will continue to follow-up on this meeting, and
will alert CYA members whenever opportunities for advocacy arise. The CFSICC is
currently in the process of being chartered; we don't expect that we will
receive responses to CYA's specific public policy requests until some time after
this process is completed.
However, we are pleased to announce
Dr. Lee has given a general response to CYA's involvement in the CFSICC meeting,
and to your letters. In a letter date August 1, 1996, he writes:
"Recently, I had the opportunity to
some undistracted time to re-read and digest the letters as well as to carefully
review testimony and commentary from youthful representative attending the April
10th meeting. CFS is a perplexing and in many cases devastating disease. In the
midst of this, I am pleased to see leaders such as yourself emerging to guide
and bring hope to those who are afflicted at an early stage in their lives. You
are to be applauded for your commitment.
"I urge you to maintain your advocacy
to help other understand that the methodical and scientific approach to the many
questions that CFS presents is the most likely way to produce positive results
in the future."
CYA offers sincere thanks to all of
YPWCs, family members, and other supporters who helped to make the April CFSICC
meeting such a notable event for YPWCs, and who continue to lend support to our
advocacy efforts. Stay tuned!