Letters to Dr. Lee
Rebecca C. Moore
Originally published in Youth Allied By CFIDS, Spring
It was essential that we
strong case for our requests to the CFS ICC. We had no way of knowing how our
comments and suggestions would be received by the committee. But we did know
that the committee's members needed to be convinced that children and youth with
CFIDS truly existed if we were going to gain their approval for our public
policy requests. Telling them that pediatric CFIDS was a serious problem might
not be enough. We had to show them that people from all around the country cared
about this issue.
CYA turned to the CFIDS community for
requesting that people write letters to the chairman of the CFS ICC, Assistant
Secretary for Health Dr. Philip Lee.
The CFIDS community responded to our
with a strong show of support for children, teens and young adults with CFIDS.
We received letters from 25 states written by YPWCs, parents, siblings, adult
PWCs, physicians and healthy friends.
On April 10, we presented 83 letters
from YPWCs or their parents) to the committee's co-chair Dr. John LaMontagne
from the NIH. (Dr. Lee couldn't attend the meeting because he was attending
Commerce Secretary Ron Brown's funeral.)
CYA also created a "composite letter"
excerpts from the letters and distributed it to everyone who attended the
meeting. Through sharing this letter with the CFS ICC members and others, we
made sure that everyone learned of your struggles, your need for better
treatments and educational opportunities, and your hope for recovery. We have
included a copy of the composite letter with this newsletter; please use it to
educate the media, legislators, doctors and other people in your community about
Go to Dr.