In this Issue
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In this Issue
- 2004 Annual Fund
- From the Desk of President & CEO Kim McCleary
- Spotlight on PWC's Rivka Solomon and Shannon Flammer
- Living with CFIDS: Personal Stories
- Bringing CFIDS to Balance
- NIH Director Hears from CFIDS Advocates
- A report on the AACFS Conference
2004 Annual Fund
Conquering CFIDS takes effective
strategy, collaborations, hard work and commitment. It also takes financial
So please, make your most generous gift possible to the CFIDS
Association of America's 2004 Annual Fund.
Your tax-deductible donation supports priority programs in
CFIDS education, public policy, research and will enable the Association to
leverage the momentum generated over the past year, match funding with
scientific opportunity and launch new projects aimed at speeding meaningful
improvements to the lives of people with CFIDS.
make your secure online gift. Thank you for caring about CFIDS and the men women
and children it affects.
From the Desk of President & CEO Kim McCleary
Kim offers perspective on advocacy as a means to achieve shared goals and
meet the diverse needs of the CFIDS community. Read more at
Spotlight on PWC's Rivka Solomon and Shannon Flammer
Two young women, strangers living on opposite coasts, have used the
life-changing illness they have in common to reach fellow PWCs and those outside
of the CFIDS community in two separate projects. Visit
to read the intriguing
story of how Rivka Solomon and Shannon Flammer are each using their time and
talents to encourage healing and to raise awareness of CFIDS.
Living with CFIDS: Personal Stories
readers have been sharing their own stories of how CFIDS impacts their lives.
Spouses, friends and children of PWCs (people with CFIDS) are taking the time to
write us and tell us about their journey, their joys and sorrows, the changes in
their lives. In this month's column, we are publishing Robert Joe Stout's
account of how he and his wife face the challenges of living with CFIDS, which
his wife calls a "very unsexy disease." Visit
http://www.cfids.org/cfidslink/stout.asp to read
this life-affirming memoir from
the self-described "house-husband sort of journalist," and please consider
sending us your own story. Send your personal stories to Marcia Harmon at
Bringing CFIDS to Balance
Marla McKibben, founder
of P.A.N.D.O.R.A, reports on a Ft. Lauderdale event sponsored by Balance
magazine at which P.A.N.D.O.R.A and the CFIDS Association partnered to
distribute CFIDS information to over 350 women. Marla also expresses her hopes
for future collaborations within the CFIDS community at
NIH Director Hears from CFIDS Advocates
September 27, 2004, the CFIDS Association's President & CEO Kim McCleary
presented a detailed report to the federal CFS Advisory Committee documenting a
steep decline in NIH funding for CFIDS research. An Action Alert! was issued
that day through our Grassroots Action Center, asking advocates to write to NIH
Director Dr. Elias Zerhouni to express concern about the erosion of support for
CFIDS research. In the past month, 452 advocates have written to Dr. Zerhouni.
Add your voice to theirs! Visit
information and a sample letter.
The American Association for
Chronic Fatigue Syndrome (AACFS) held its 7th bi-annual
research/clinical/patient conference in Madison, Wisc., October 8-10.
Participants included 123 researchers/clinicians and 112 patients/advocates.
Fifty-nine of the 235 participants came from 16 countries outside the U.S. In a
collaborative effort with the AACFS, the CFIDS Association will provide coverage
of three-day meeting in the winter issue of the CFS Research Review. Summaries
of each of the three conferences, which had some overlapping sessions, will be
complemented by short features on some of the most promising research and
clinical studies from around the world.