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In this Issue

• CFS Advisory Committee to meet
• Ampligen Trial Update
• From the Mail Bag
• A Personal Story
• Seabiscuit photos to be auctioned on eBay
• Summer Issue of CFIDS Chronicle has mailed
• CFIDSLink Out & About

CFS Advisory Committee to meet
The Department of Health and Human Services CFS Advisory Committee is slated to meet next on September 27, 2004 in Washington, D.C. Although the public announcement of the meeting has not yet been published in the Federal Register, as required under the Federal Advisory Committee Act, the committee's web site still shows this as the next meeting date. News about the next meeting and the committee's charter renewal (due Sept. 5, 2004) will be sent to our Grassroots Action Center listserv -- register now at http://capwiz.com/cfids/mlm/ to be sure you receive this notice and others!

Ampligen Trial Update
Results of the latest multi-center trial of Ampligen, an experimental treatment for CFIDS, will be announced at the Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC) being held Oct. 30 - Nov. 2 in Washington, D.C. Ampligen has been tested in CFIDS since the late 1980s and has been the subject of some controversy over the years. The study to be reported at ICAAC is the largest to date and advocates for the drug and investors alike hope it will provide sufficient evidence of safety and effectiveness in treatment CFIDS to warrant marketing approval from FDA. For more information about Ampligen, read a 1999 Q&A with Dr. David Strayer at http://www.cfids.org/archives/1999/1999-1-article08.asp, the manufacturer's medical director or visit Hemispherx's web site at www.hemispherx.net/content/ftp/clinical_trials_cfs.htm. 

From the Mail Bag
Victoria Agosta of Clarkson, Georgia has been disabled by CFIDS since 1994. At http://www.cfids.org/cfidslink/sept-mail-bag.asp she shares her thoughts on the value of amplifying CFIDS awareness and calls for support of a fundraising raffle organized by fellow PWC Mark Kahle of Costa Rica.

[Because your input is important to us we launched a new feature in this month's CFIDSLink -- From the Mail Bag. If you have a message you'd like to share with the Association, please send it to cfidslink@cfids.org. We plan to include at least one letter from our readers in each edition of the CFIDS Link]

A Personal Story
CFIDS doesn't just impact the life of the people who have the illness. It affects everyone who cares for them. In a moving story, one of our readers, Sam Oldham, describes what it's like to fall in love with a woman with CFIDS. Please visit http://www.cfids.org/cfidslink/oldham.asp to read the story, and please consider sending us your own story. We'd like to hear from spouses, children, siblings, friends--everyone whose life is changed in some way by this illness. Send stories to Marcia Harmon at stories@cfids.org.

Seabiscuit photos to be auctioned on eBay
Later this month, more than 75 photographs of legendary racehorse Seabiscuit will be auctioned on eBay to help raise money for and awareness of CFIDS. Visit http://www.cfids.org/cfidslink/auction.asp to learn more.

Summer Issue of CFIDS Chronicle has mailed
The summer issue of the CFIDS Chronicle has been mailed to current members of the CFIDS Association of America. The cover story, "When Working Out Doesn't Work Out," explores problems that CFIDS patients experience when they try to exercise and offers ways to combat deconditioning without risking serious relapse. Dr. Alan Pocinki writes about symptoms of joint hypermobility, a condition he sees with unusual frequency in his CFIDS patients. "Living With CFIDS" essays by Marie Tyburec and Mary Anne Mitchell share poignant perspectives on the illness experience. Get your copy by joining the Association at http://www.cfids.org/ecommerce/membership.asp.

CFIDSLink Out & About
Visit http://www.cfids.org/cfidslink/august-out-n-about.asp for up-to-date news and happenings within the CFIDS community.