• Living with CFIDS: Personal Stories
• CFS Advisory Committee Meeting Planned
• Long-term Disability Claims Under Scrutiny
• Board Welcomes New Directors and Elects New Officers
• Winning the Long-Term Disability Battle
• Advocates Respond
• Davis Reaches Decade Service Mark
• CFIDSLink Bulletin Board

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 28-year-old Marla Gibbs, who describes how CFIDS has redefined her life in new ways, her struggle to face her "ordeal head on and take each day as it comes," and her determination to "fight this cruel disease until there is a cure." Visit http://www.cfids.org/cfidslink/gibbs.asp to read her story, and please consider sharing your own. Send your personal stories to Marcia Harmon at stories@cfids.org.

CFS Advisory Committee Meeting Planned

The federal CFS Advisory Committee will hold its first meeting of 2005 on January 10 in Washington, D.C. There will be a special focus on youth with CFIDS, and several guests with expertise and/or personal experience in this area have been invited to participate by committee chairman Dr. David Bell. The agenda is also expected to include health agency updates and public testimony.

The meeting will be held at the Hubert Humphrey Building from 9:00 a.m. until 5:00 p.m. It is open to the public. The official meeting notice will be published in the Federal Register and will also be posted to http://www.hhs.gov/advcomcfs/index.html along with details about how to register to present testimony. Those who don't have internet access can reach committee staff at 202-690-7694.

Long-term disability claims under scrutiny

The nation's largest disability insurer agreed to a multi-million dollar settlement on Nov. 18 that may impact some persons with CFIDS who have had claims denied. Unum-Provident will have to pay $15 million in fines and reconsider 200,000 denials under the terms of the agreement. Read more at http://www.cfids.org/cfidslink/long-term-disability.asp.

Board welcomes new directors and elects new officers

The CFIDS Association's Board of Directors evaluates past performance and sets future direction. The Board acts as a whole on behalf of all who have a stake in the Association's mission. Three new directors join the Board, while tribute is paid to those who have served in the past. Read more about the Association's Board of Directors at http://www.cfids.org/cfidslink/board-list.asp.

Winning the Long-Term Disability Battle

Are you considering making a claim with your insurer for long-term disability benefits because CFIDS is making it too difficult to continue working? Have you already filed a claim, only to have it questioned by your insurance company? Or has your claim been denied, and you're thinking about how to launch an appeal?

If you're disabled by CFIDS and you are covered by long-term disability insurance, we have an article for you. Writers Justin Frankel and Jason Newfield are attorneys who have handled numerous disability insurance claims, appeals and litigation involving CFIDS and fibromyalgia. In their article, they'll guide you through the minefields that patients often step in inadvertently, "blowing up" their chances for winning disability benefits. Just go to http://www.cfids.org/cfidslink/disability.asp to read this practical and informative overview.

Advocates Respond

CFIDS advocates have used the Association's Grassroots Action Center to send more than 12,000 letters to Congress, federal health officials and writers, editors and producers.

An Action Alert! sent out on Nov. 19 asked advocates to contact Fox network affiliates about a new tv medical drama, House. The show included a segment about CFIDS/FM that reinforced negative stereotypes. Within three days, nearly 1,000 letters were sent by advocates in response.

The power of the internet and the passion of CFIDS advocates create a potent force. To learn more, click on the Capitol building icon on the Association's home page (www.cfids.org). There you'll find numerous Action Alerts! and sample letters to facilitate your responses. Sign up for the listserv and be among the first to learn of timely opportunities to take action.

Davis Reaches Decade Service Mark

Jamie Davis, the Association's Director of Development and Chief Operating Officer, will mark her 10-year anniversary of Association service this January. Jamie joins three other staff members in this achievement: Kristina Hopkins (14 years), Kim McCleary (nearly 14 years) and Nova Bouknight (11 years). Kris is the Association's Controller; Kim is President & CEO and Nova is Support Network Services Coordinator. The Association has 12 full-time and one part-time staff members with an average tenure of more than six years. The staff's intense loyalty and dedication to the Association's mission is one of the organization's most precious assets.

CFIDSLink Bulletin Board

Visit http://www.cfids.org/community/bulletin-board.asp for notices from individuals and organizations about resources and services available for PWCs, as well as requests for information and assistance.

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