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THE CFIDS MONTHLY UPDATE: SPRING 2003

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UPDATE ON SYMPOSIA ARTICLE

In late February, The CFIDS Association released a camera-ready print article to local newspapers across the United States through North American Precis Syndicate (NAPS).

The article, titled “Targeted Research may Hold the Key to CFS,” highlights the findings of the Association’s CFIDS research symposia. It examines the role that neurological abnormalities, hormone imbalance and a reduced ability to resist infection may play in CFIDS. To date, the article has appeared in more than 110 newspapers in 12 states with a combined readership of more than 2.9 million.

MERCK MANUAL OF MEDICAL INFORMATION

In 1997, the Merck Manual of Medical Information, a long-respected source of information to the medical community, published its first edition for consumers.

Last month, Merck released the first update of that edition and now features diseases of unknown causes including chronic fatigue syndrome, Gulf War syndrome and multiple chemical sensitivity.

The New York Times and The Washington Post published articles about the second edition of the Merck Manual and mention the addition of chronic fatigue syndrome.

USA TODAY

On May 29 USA Today published and article in its LIFE section about the release of new editions of Laura Hillenbrand’s best-seller “Seabiscuit: An American Legend.”

The article discussed Laura’s battle with CFIDS and how the illness will prevent her from attending the Hollywood premiere for the movie based on her book. Universal Studio’s Seabiscuit will be released on July 25.

UPDATE ON HILLENBRAND’S NEW YORKER PIECE

Laura Hillenbrand has completed an article that appeared in the July 7th edition of The New Yorker magazine. The piece offers a personal and detailed account of her long battle with CFIDS and its impact on her life.

The article was slated to run earlier in the year however, it was rescheduled due to war coverage.

SEABISCUIT HATS AND SWEATSHIRTS NOW AVAILABLE

Purchase a Seabiscuit hat or sweatshirt before the movie hits the theaters! Visit http://www.horsehats.com/seabiscuit-cfids.html.

A portion of the purchase price from every hat item sold will go to The CFIDS Association of America to help support education, research and advocacy.

Many thanks to HorseHats owner, Dave Williams for his generosity.

MARK YOUR CALENDARS AND JOIN US AT LOBBY DAY 2003!

Advocates from across the country will gather in Washington, D.C., on Sept. 17-18 for The CFIDS Association’s 12th annual Lobby Day event.

Over the past few years, the event has drawn 70-80 participants, including people with CFIDS, family members and friends. Even though it takes a physical toll on patient-advocates, most participants report being energized by the opportunity to engage members of Congress about the pressing needs of those with CFIDS.

Lobby day begins with a training session to help newcomers become comfortable with both the message and its delivery and to ensure we carry a strong and consistent message.

The next day, we head to the hill – and the more advocates we have on the hill, the greater our impact. There’s still time to register, so join us in our nation’s capital this fall. For more, visit http://www.cfids.org/advocacy/lobby-day.asp, call 704-365-2343 or e-mail lobbyday03@cfids.org.

IT’S ANNUAL REPORT TIME AGAIN

The Association’s 2002 Annual Report, Putting CFIDS First, details last year’s accomplishments and highlights current and planned Association efforts. Most importantly, it gratefully acknowledges those who have so generously supported our vital work.

The report mailed in late June and is available at no charge to all who request it, and is posted on the Association’s Web site at http://www.cfids.org/about/annual-reports.asp. To receive a copy of the 2002 Annual Report, e-mail kalmond@cfids.org or call the Resource Line at 704-365-2343.

CFIDS LINK

Have not yet signed up to receive the Association’s e-newsletter? E-mail kalmond@cfids.org today!

CFIDS Link will be delivered to your computer the first Monday of every month. Containing the latest information on CFIDS education, research studies, public policy updates and Association news, CFIDS Link will keep you informed and in the loop. Each newsletter profiles a researcher, advocate or PWC in a special “Spotlight on CFIDs” section.

WEB SITE GETS REFRESHED

The Association is in the process of redesigning www.cfids.org. The enhanced site will be easier to read and navigate, yet still provide the news, resources and vital information you rely on.

THE AMERICAN ACADEMY OF PAIN MANAGEMENT

will hold its 14th annual clinical meeting, Pain Management: Together we are going places, September 4-7, 2003 at The Adams Mark Hotel in Denver, Colorado. Visit www.aapainmanage.org or call 209-533-9744 for more.

On behalf of The CFIDS Association of America, we thank you for your support and encouragement in our efforts to conquer CFIDS.

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