In this Issue
November 2004
CFIDSLink Electronic Newsletter

CFIDSLink is e-mailed monthly to all those interested. To sign up for the electronic newsletter visit  http://www.cfids.org/subscribe.asp.

In this Issue

2004 Annual Fund
Conquering CFIDS takes effective strategy, collaborations, hard work and commitment. It also takes financial resources.

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.

Visit http://www.cfids.org/ecommerce/donations.asp today to 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 http://www.cfids.org/cfidslink/nov-desk-kim.asp.

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 http://www.cfids.org/cfidslink/november-spotlight.asp 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
Many CFIDSLink 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 stories@cfids.org.

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 http://www.cfids.org/cfidslink/pandora.asp.

NIH Director Hears from CFIDS Advocates
On 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 http://capwiz.com/cfids/mail/oneclick_compose/?alertid=6433591 for more information and a sample letter.

AACFS Conference
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.