In this Issue
CFIDSLink is e-mailed monthly free of
charge to all those interested. To sign up for the electronic
- $4 Million Available for CFIDS Research
- Gene Pattern Revealed in Pilot Study
- From the Desk of Kim McCleary
- Lobby Day Success
- Living with CFIDS: Personal Stories
- kNOw MORE CFS Seminar in Charlotte, NC
- Bulletin Board Notices
$4 Million Available for CFIDS Research
Over the past 18 years, the CFIDS Association has directly funded
more than $4.7 million in CFIDS research, providing critical seed funding for
innovative pilot research projects. We have also worked to increase the amount
of federally-funded research on CFIDS through our advocacy program.
On July 14 our public policy efforts paid real dividends when
the National Institutes of Health issued an announcement of special funds for
CFIDS research. Learn more about this announcement and how it came to pass. http://www.cfids.org/cfidslink/2005/rfa.asp.
Gene Pattern Revealed in Pilot Study
A new study reported by Dr. Jonathan Kerr and colleagues adds to existing
evidence of immune activation and mitochondrial dysfunction in CFS. Read more
about this exciting research at http://www.cfids.org/cfidslink/2005/kerr.asp.
From the Desk of Kim McCleary
Congress is considering a sweeping reorganization of the National Institutes
of Health, the world's largest biomedical research institution. If you care
about CFIDS – or any medical condition – you should care about this legislation.
Visit http://www.cfids.org/cfidslink/2005/aug-ftdo.asp to read more.
Lobby Day Success
On May 24, U.S.
Representative Danny Davis told his colleagues in Congress, "More federal
funding is needed to answer basic questions [about chronic fatigue syndrome].
CFS warrants the support of this Congress, and we must find a way to do more for
the hundreds of thousands of Americans affected by this serious illness." Read
his full statement, made in response to a visit from the mother of young man
with CFIDS, Association board member and Davis' constituent, Dr. Lynn C. Royster
Living with CFIDS: Personal Stories
Many CFIDSLink readers have been sharing stories of how CFIDS impacts their
lives and the lives of their families. Stories of profound loss, of anger and
acceptance, of a struggle without end. In this month's column, you'll meet
Barbara Romero whose daughter Kristy was diagnosed with CFIDS when she was just
13 years old.
Visit http://www.cfids.org/cfidslink/2005/romero.asp to read
Barbara's story, then please consider sharing your own. Send your personal
stories to Marcia Harmon at
kNOw MORE Seminar in Charlotte, NC
The CFIDS Association of America is pleased to announce its second
"kNOw MORE CFS" Education and Empowerment Seminar. This half-day educational
seminar, to be held on Sunday, November 13, 2005 in Charlotte, North Carolina,
will feature two nationally recognized experts in CFIDS research and care,
speaking on topics of interest to persons with CFIDS, their families and health
care professionals. A question & answer forum will follow the presentations,
allowing participants to interact with speakers, ask questions and learn more
about the subject matter presented.
Watch upcoming issues of CFIDSLink for more details. Or send
an e-mail, subject line KNOW MORE, to email@example.com and we’ll put you on our
mailing list to receive a brochure in October.
Visit http://www.cfids.org/community/bulletin-board.asp for
up-to-date news and happenings within the CFIDS community.