THE CFIDS QUARTERLY UPDATE DECEMBER 2002
December 2, 2002
CFIDS ASSOCIATION JOINS CHRONIC PAIN CONSORTIUM
For the first time, 45 national organizations have joined together to raise awareness of the problems caused by pain. Partners for Understanding Pain is a consortium of groups that touch the lives of people with chronic, acute and cancer pain. Each partner brings its own perspective to the dialogue, making Partners for Understanding Pain a comprehensive network of resources and knowledge about issues in pain management.
The consortium began its awareness campaign by designating September as Pain Awareness Month. Partners for Understanding Pain will work to build understanding of pain as a serious public health issue, targeting health care professionals, the business community, legislators, individuals with pain and their families, and the general public. “Pain touches all aspects of our society,” said Penney Cowan, executive director of the American Chronic Pain Association (ACPA), which is spearheading the Partners for Understanding Pain consortium. “This partnership is unique because it reflects both the medical and socioeconomic impacts of pain. Pain and its consequences are issues of unrecognized enormity.”
Since 1980, the ACPA has offered peer support and education for individuals with chronic pain and their families. For more information, visit www.theacpa.org.
As part of the awareness campaign, consortium will educate the public about pain facts versus myths and the impact of pain on society, including the following:
- More than 50 million Americans suffer from chronic pain;
- Our economy loses an estimated $100 billion annually in productivity due to pain;
- Multi-disciplinary pain management units are closing as health care facilities struggle with declining revenues;
- Rising health care costs combined with limited health insurance benefits leave some, especially senior citizens, unable to get the care that can help them manage their pain; and
- Underserved populations (e.g., ethnic minorities, seniors, women) continue to face barriers to effective pain treatment.
In September 2002 the Partners for Understanding Pain released results of a survey of public perceptions of pain. Over the next 12 months, they will focus on educational activities culminating in a national roundtable and white paper on pain management issues.
The consortium hopes that the education program will set the stage for ongoing awareness activities during the Decade of Pain Control and Research, the 10 calendar years which began on January 1, 2001.
MEDICAL EDUCATION UPDATE
The Association’s Primary Care Provider Education Project was designed to teach healthcare professionals how to recognize and manage CFIDS cases. The project, co-sponsored by the U.S. Centers for Disease Control and Prevention, also offers self-study materials in print-based and video-based formats. A Web-based format will be available online at The CFIDS Association’s Web site, www.cfids.org, next month.
Project Coordinator Terri Lupton spent a busy October and November running CFIDS exhibits at four national conferences, interacting with hundreds of medical professionals and distributing more than 3,500 pieces of educational literature.
Exhibits were held at the following conferences:
• American Academy of Family Physicians (AAFP), San Diego, CA – 5,200 attendees
• Infectious Disease Society of America (IDSA), Chicago, IL – 3,500 attendees
• Pri-Med East (Multidisciplinary Primary Care Provider conference), Boston, MA – 7,500 attendees
• Nurse Practitioner Association for Continuing Education (NPACE), Boston, MA – 750 attendees
At the NPACE conference, Patricia Major, MD, assistant professor at the University of Miami Medical School, was a featured presenter. Her insights into CFIDS were well received by audience of 75 nurse practitioners.
“Interest in chronic fatigue syndrome is increasing,” Ms. Lupton says. “At these recent conferences, I have seen less prejudice against the diagnosis of CFIDS and a sincere interest in learning more about this complex disorder. Unfortunately, providers can’t report to frustration with managing the illness and call for more cfids research and tools to help them better care for their patients.
NEW YORK TIMES AD
an earmarked gift from a foundation enabled the Association to be included in The New York Times annual “Giving” section. With 2 million readers, we hope the ad (11/28/02, Section E, page 29) will enable us to reach more people whose lives have been affected by CFIDS, as well as attract broad based support for the important work our organization carries out on their behalf.
THE NOVEMBER ISSUE OF ELLE MAGAZINE...
featured a letter to the editor from The CFIDS Association of America in response to the article, “The Thin Successful Woman’s Disease,” by Judith Warner, that ran in the August 2002 issue. The published letter states that Warner is harming millions of individuals with difficult-to-diagnose illnesses by suggesting that when medical science cannot explain their symptoms, they must be inflicting them upon themselves.
A monthly, award-winning magazine which explores topics on art, science and history, will feature an article on CFIDS. The article, slated to run in the December 2002 issue, reports on current CFIDS research, profiles Laura Hillenbrand and her personal experience with the illness and includes comments from Association President and CEO Kim Kenney.
“THE INFINITE MIND”
“The Infinite Mind,” a national public radio program, produced an hour- long segment on CFIDS that aired on Oct. 9. Dr. Goodwin, the show’s host and former head of the National Institute of Mental Health, focuses on research that indicates CFIDS is a brain disorder.
The segment covered a range of CFIDS topics, including some popular misconceptions; what body systems are involved; what it feels like to have the illness; and what current research is revealing.
Several CFIDS medical experts, patient advocates and The CFIDS Association of America’s President and CEO Kim Kenney contributed to the segment.
KIM KENNEY FEATURED
The CFIDS Association President and CEO Kim Kenney was profiled in the July 2002 edition of Association Management, a business magazine for non-profit association executives.
The Q&A article chronicles how Kenney’s personal commitment and a dedicated staff have enabled the Association to remain true to its mission—to find a cure for CFIDS.
Visit http://www.cfids.org/about/kimk-am-article.asp to read the interview.
BAND’S STAMINA TOUR WRAPS
The Nashville-based rock band Jordan’s Wake recently wrapped up their 30-day,
60-concert, 22-state Stamina Tour which helped raise awareness of and funds for CFIDS.
The band made a Charlotte, N.C. appearance on October 13 for a special benefit
concert that included favorite local band, Backyard Green.
Local coverage of The CFIDS Association of America sponsored event included Creative Loafing, South Charlotte Weekly and the Matt and Ramona Show on 107.9 The Link.
The Chicago Tribune featured an article in its Nov. 17 issue, “Hope for the exhausted,” that reports on a DePaul University study finding therapies to combat the drain of CFIDS. The article details how PWC and study participant Christina Ditto is learning to cope with her illness. “We’re evaluating new therapies, and we’re very optimistic about the outcome,” Leonard Jason, a clinical psychologist and principal investigator of the DePaul study as quoted in the article.
For more information or to enroll in the program, please contact the project director, Susan Torres-Harding, at 773-325-4628.
To register with the Chicago Tribune and read the article, visit http://www.chicagotribune.com/features/health/chi 0211170226nov17.story.
a person with CFIDS (PWC), made her first public appearance to promote her best-selling novel “Seabiscuit: An American Legend” on August 29 at a Barnes and Noble in Washington, D.C.
Her reading aired on Sunday, Nov. 3 at 3:00 am on C-SPAN-2. Previously, she has been unable to make public appearances due to her poor health.
Ms. Hillenbrand was also profiled in the Oct. 24 edition of The Boston Globe. This compelling and compassionate article details Hillenbrand’s struggle with CFIDS and her immense four-year effort to research and write “Seabiscuit: An American Legend.” To read the article at: http://www.boston.com/dailyglobe2/297/livingAgainst_all_odds+.shtml
Hillenbrand has also been working on an article about her battle with CFIDS, slated to appear in The New Yorker magazine in early 2003.
LOBBY DAY 2003 PLANS ANNOUNCED
Mark your calendar now for March 19 and 20, 2003. CFIDS advocates will gather in our nation’s capital to prepare for and conduct the Association’s 12th annual Lobby Day. The timing is perfect to inform newly elected members of Congress and to refresh ties with returning members as the 108th Congress gets underway.
The 2002 event held last March drew 72 advocates from 15 states. The training session and extensive written materials ensure that the group is well prepared to meet with lawmakers and their staff members. Many advocates report that the support and affirmation they receive during the meetings make the experience worth repeating year after year. The collegiality of others who understand the impact of CFIDS is memorable for other participants.
If you are interested in attending, call 704-365-2343 or send a message to firstname.lastname@example.org. Additional details will be announced in January on the Association’s Web site at http://www.cfids.org/advocacy/lobby-day.asp.
RADIO NEWS RELEASE
Since May 2002, The CFIDS Association’s radio PSA on CFIDS has been broadcast on 293 radio stations in 49 different states with a combined audience of more than eight million.
E-mail Leah Moseley at email@example.com to request a copy.
THE AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME (AACFS)
will hold its 6th International Scientific and Clinical Conference January 31 – February 2, 2003 at the Westfield Marriott Hotel in Chantilly, Virginia.
For more information visit www.aacfs.org or send an e-mail to firstname.lastname@example.org.
2002 ANNUAL FUND UPDATE
This year’s campaign has proven to be The Association’s most challenging Annual Fund since the launch of the first campaign in 1998. Charitable organizations around the country are experiencing a decline in donations, due in part to the state of our economy and tension overseas.
We appreciate the confidence our donors have demonstrated in The Association and are grateful for every donation we have received in response to this year’s appeal. Through our loyal friends and supporters we anticipate a strong finish to this year’s campaign and are hopeful that we can match the success of previous years. Thank you in advance for re-affirming your support and commitment to the Association and our shared mission to conquer CFIDS.
If you haven’t yet made your 2002 Annual Fund contribution and would like to do so, please call the Association’s Resource Line at 704-365-2343 or visit www.cfids.org.
The holiday sales are on! Now is the time to save money at your favorite iGive stores, raise money for the Association, and get your holiday shopping done in a snap! Visit www.igive.com.
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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