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In this Issue
January 2005
CFIDSLink Electronic Newsletter  


 

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

In this Issue

  • NIH Reissues CFS Program Announcement
  • What's in a Name?
  • CFS Advisory Committee Meets
  • Winter Chronicle mails soon
  • Out & About
  • Living with CFIDS: Personal Stories
  • Seabiscuit Photograph Auction
  • Thanks to our Supporters
  • Local Events
  • Support Group Leader Seminar

NIH Reissues CFS Program Announcement
On December 28, 2004, the National Institutes of Health (NIH) reissued the program announcement (PA) requesting research applications for study of the pathophysiology and treatment of chronic fatigue syndrome. This program announcement was originally released on May 15, 1998. There are no dedicated funds for applications received as a result of this announcement. A Request for Applications (RFA) is still expected from NIH, based on the latest report made to the Department of Health and Human Services CFS Advisory Committee. This RFA will carry set-aside funds for meritorious applications received. The full text of the PA may be read at: http://grants.nih.gov/grants/guide/pa-files/PA-05-030.html.

What's in a Name?
The Association has received scores of responses to the questionnaire we recently sent to CFIDSLink subscribers who live outside the U.S. We wanted to hear their perspective on several concerns that are important to Americans who have CFIDS, and compare opinions and experiences of people across the world on issues like the name of the illness, how people with CFIDS (PWCs) are treated by health care providers and the general public, and their government's response to the illness. We begin our coverage of responses received so far from readers spanning from Ecuador to Argentina. Their perspectives are fascinating, and we invite you to check them out at http://www.cfids.org/cfidslink/me-article.asp. We will continue coverage of questionnaire results in the next issue of the Link.

CFS Advisory Committee Meets
The federal CFS Advisory Committee met on January 10, 2005, in Washington, D.C., to hear presentations and testimony on issues affecting children and adolescents with CFIDS, as well as to receive agency reports and updates on past recommendations. A full report is available at http://www.cfids.org/cfidslink/CFSAC_Jan05.asp.  

Winter Chronicle mails soon
The winter 2005 issue of the CFIDS Chronicle will mail in early February to current members of the CFIDS Association of America. The cover story, "Sex & CFS," takes a revealing look at the issues of intimacy and sexuality faced by those with CFS. Author Patricia Fennell offers suggestions on discussing the topic with your doctor, as well as ways to reignite your love life. In "What a Pain!" Dr. Alan Spanos offers an insightful look at treatments for chronic pain management. You'll also find personal essays, information about an increasingly popular complementary therapy and much more. Get your copy by joining the Association at http://www.cfids.org/ecommerce/membership.asp.  Current members can renew their membership through the same link.

Out & About
Next month, Association president and CEO, Kim McCleary, will participate in a two-day meeting sponsored by the National Heart, Lung and Blood Institute (NHLBI). NHLBI, one of the institutes of the National Institutes of Health, funds several CFIDS studies. For more about this meeting, as well as other happenings of interest to the CFIDS community, visit http://www.cfids.org/cfidslink/OutAndAbout_Jan05.asp.  

Living with CFIDS: Personal Stories
Many CFIDSLink readers have been sharing stories of how CFIDS impacts their lives. Stories of profound loss, of anger and acceptance, of a struggle without end. In this month's column, we publish a story from PWC Lorie Woods, who vividly describes her anger and despair -- "Why don't they see I wouldn't choose to live like this!" Visit http://www.cfids.org/cfidslink/LorieWoods_Jan05.asp to read Lorie's story, and please consider sharing your own. Send your personal stories to Marcia Harmon at stories@cfids.org.

Seabiscuit Photograph Auction
Last November the CFIDS Association auctioned on eBay a spectacular collection of photographs of legendary racehorse, Seabiscuit.

The black-and-white photographs were donated to the Association by Laura Hillenbrand, best-selling author of Seabiscuit: An American Legend. Laura has battled CFIDS since 1987 and is committed to helping reshape public perceptions of CFIDS and raise much-needed funds for CFIDS education, public policy and research. The photos were given to Laura by John Bosko, who collects and develops vintage negatives. The Seabiscuit photographs were printed directly from the original negatives and each photo was signed by Laura.

The auction, which concluded on November 19, raised more than $6,300 and will benefit Association programs aimed at bringing an end to the pain, disability and suffering caused by CFIDS.

Thanks to our Supporters
1,188 CFIDS Association supporters contributed to the 2004 Annual Fund, raising more than $292,536. The Annual Fund campaign provides the Association the resources to pursue solutions -- and better health -- for people with CFIDS (PWCs). If you contributed to the 2004 campaign, please accept our deepest gratitude. If you've not yet made your gift, we hope you will consider making a special year-opening donation and help us accelerate the vital programs that will bring meaningful change to the lives of PWCs and those who care about them. You can make your gift online at http://www.cfids.org/ecommerce/donations.asp or mail your donation to the Association at PO Box 220398, Charlotte, NC 28222-0398.

Local Events
Visit http://www.cfids.org/community/local-events.asp for information on local happenings, conferences and special events of interest to the CFIDS community.

Support Group Leader Seminar
The National Fibromyalgia Association invites support group leaders to apply for scholarships to attend "Leaders Against Pain," a two-day advocacy and media training seminar to be held March 18-20, 2005, in Orange County, California. Applications must be submitted before February 1. For information contact April Quinn at aquinn@fmaware.org.