THE CFIDS MONTHLY UPDATE
CFIDS FEDERAL ADVISORY COMMITTEE UPDATE
Officials at the Department of Health and Human Services (DHHS) still have not confirmed details on the planned transformation of the Chronic Fatigue Syndrome Coordinating Committee (CFSCC) into a full-fledged federal advisory committee for CFS. The committee was announced 18 months ago but stalled due to the change in presidential administrations and competing national priorities following Sept. 11. Most recently, it has been caught up in the restructuring of the 260-plus advisory committees that report to DHHS Secretary Tommy Thompson.
DHHS has in the past expressed strong commitment to creating a full CFS advisory committee, which would provide CFIDS advocates with more power than they had under the CFSCC. Advisory committee status for CFS was initially recommended by the General Accounting Office in 2000. Secretary for Health Thompson expressed his support for the advisory committee in a January 11, 2002 letter to Representative Rodney Frelinghuysen (D-NJ).
The CFIDS Association has forcefully expressed patients’ outrage about the serious delay in action on the committee. As far as we can determine, there is no reason that the transformation cannot take place despite the cap on the number of advisory committees, as the CFSCC is still being counted as one of the 260 HHS advisory committees in existence. Despite this, DHHS officials have requested suggestions for alternative, less formal group structures, since the administration is working to open up advisory committee slots for bioterrorism and domestic security, as authorized by Congress.
The Association will continue to push hard for the promised CFS advisory committee, but has responded to DHHS’ request for alternative suggestions. Our priorities are to ensure that any new CFS body formed has the appropriate authority to advance CFS policy, gain top-level DHHS leadership and secure adequate representation of related agencies and community stakeholders – particularly patient advocates. Also important is ensuring that the group has the necessary support to continue beyond personnel and other changes within the administration.
We are determined not to allow this restructuring effort to derail important progress made by the CFSCC, and will continue to work with DHHS staff and others whose efforts are constructive to secure a body that will strengthen federal efforts to address CFS.
BAND’S “STAMINA” TOUR TO BENEFIT CFIDS
The rock band Jordan’s Wake plans to play a series of 60 concerts in 30 days this fall to raise awareness of CFIDS. The band’s “Stamina” tour is slated to begin on Sept. 25 with a pair of shows in Nashville, Tenn., then will visit college campuses around the South, Midwest and Northeastern U.S. Proceeds will be donated to The CFIDS Association of America.
The band, whose music has been compared to rock bands such as Smashing Pumpkins and The Clash, was still booking its concerts at press time. For tour dates and more information on Jordan’s Wake, check the band’s Web site at http://www.jordanswake.com/stamina.html.
Band members decided to create the Stamina tour in honor of their producer, a person with CFIDS (PWC).
AUGUST 2002 ISSUE OF ELLE MAGAZINE features an article by Judith Warner, “The Thin, Successful Woman’s Disease,” that suggests the cause of ‘invisible illnesses’ such as CFIDS and FM is really psychological and anxiety-based. Warner recounts her experience seeking a diagnosis, and implies that many women fixate on being ill when physicians cannot find a cause for their symptoms, which prevents them from addressing their ‘real problems.’
Warner claims that illnesses such as CFIDS and FM “…are a cop-out-a way to assuage anxiety without having to address it.” She sums up her viewpoint by saying, “There are times in your life when you can’t-or won’t-stop banging your head against the wall. And at those times it is more comforting to think that you suffer from a syndrome than to admit your own shortcomings and inability to change.”
To read a copy of the article, go to: http://www.elle.com/inthemag/articles/August/thin_successful.asp
The Association sent a letter to the editor of ELLE correcting Warner’s assertion that CFIDS and FM are psychological in origin and stating that she 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.
The Association also informed the editors that CFIDS and FM patients are not benefiting from their illness and possibly even enjoying their martyrdom, as Ms. Warner suggests in her article, but would instead give anything to recover from the living hell their lives have become. The Association is contacting the magazine’s editors directly to further educate them about CFIDS.
CONFERENCE VIDEOTAPES AVAILABLE
“Parallels between Post-Polio Sequelae (PPS), Myalgic Encephalomyelitis/chronic fatigue syndrome and Fibromyalgia.”sponsored by the National ME/FM Action Network, are now available for $20. Featured speakers include Dr. Elizabeth Dowsett, a leading British ME researcher and Dr. Richard L. Bruno, an expert on PPS.
To place an order or for additional information, contact Mary Ellen by phone at 905-831-4744 or by e-mail at maryE@pathcom.com. Checks or money orders can be mailed to The National ME/FM Action Network Head Office, Attention: Mary Ellen, PO Box 66172, Town Center Postal Outlet, 1355 Kingston Road, Pickering, Ontario, Canada L1V 6P7.
FREE $5 DONATION
Through September 30, 2002 iGive.com is giving away FREE $5 donations for each new member who joins iGive and shops within 45 days! Tell your friends to join and shop by visiting http://www.igive.com/html/tellafriend.cfm
LEAVING A LEGACY
Include The CFIDS Association in your will and make a lasting contribution in the fight to conquer CFIDS. Gifts made through your will can be for a specific amount, a percentage of your estate or the remainder of your estate after other specific bequests are satisfied.
For additional information about bequests and other planned gifts, please contact the Association’s Director of Development at 704-364-0466 or email@example.com.
OUR BROKERAGE ACCOUNT INFORMATION HAS CHANGED
To donate stocks, bonds or mutual funds, please note the updated information below. Please instruct your broker to transfer the securities to The CFIDS Association per the following information:
DTC Number 0141
Brokerage Firm Wachovia Securities
Account Number 2114-5761
Contact Mr. Roger Fuller Jr., 800-929-0972 or 704-442-6300
New Owner The CFIDS Association of America, Inc.
PO Box 220398, Charlotte, NC 28222-0398
Federal Tax ID 56-1683450
DOCTORAL PROGRAM STUDY LOOKING FOR PATIENTS
Peggy Muench, RN, MS, PhD Candidate, is writing her dissertation studying the mind-body-spirit connection of chronic illness for the doctoral program in Counseling Psychology at BYU in Provo, UT and is currently looking for individuals willing to participate in her study. The only requirement for participants is a medical diagnosis of Fibromyalgia (FM) or chronic fatigue immune dysfunction syndrome, (CFIDS). For more information on participation in the study, e-mail your name and snail mail address to PEGYMUENCH@aol.com or send your information to Peggy Muench, 612 West 1925 North, Provo, UT 84604.
FM STORIES NEEDED TO INTERVIEW FOR NEW BOOK
Mari Skelly, author of “Alternative Therapies for FM and CFS,” is writing a book about the hard truths of living with Fibromyalgia called “Women Living with Fibromyalgia.” Mari is interested in working women, mothers, students, and pro-active women with FM, who adjust their lives to allow for family, work, a social life and a relationship. Contact Mari by e-mail at firstname.lastname@example.org, with “FM Book” in the subject line. Provide a brief overview of your FM story. Mari will respond by e-mail to appropriate candidates before proceeding with an in-depth interview. Mari can be reached by phone at 206-932-6652, between 10am & 9pm PST.
THE NATIONAL FIBROMYALGIA ASSOCIATION (NFA) will co-sponsor “21st Century Advances in the Treatment of CFIDS and Fibromyalgia” September 20-22 in Los Angeles, CA. CME credits will be offered to health care providers.
Scheduled presenters are Dr. Jacob Teitelbaum, Dr. Paul Cheney, Dr. Hal Blatman, Dr. Hyla Cass and Dr. Michael Rosenbaum.
For information, contact NFA at 2415 North River Trail Road, Ste 200, Orange, CA 92865; 714-921-0150; or e-mail NFA@fmaware.org
THE CFS ASSOCIATION OF MINNESOTA’S FALL CONFERENCE is scheduled for Saturday, October 12, 2002 at United Hospital’s Conference Hall in the St. Paul Heart and Lung Center in St. Paul, MN. Featured speakers include Dr. Anthony Komaroff from Harvard Medical School and Richard Obershaw, MSW, ACSW.
For information contact CFSA-MN toll free at 866-644-4975; fax 651-644-3023; e-mail: email@example.com; or visit their Web site at www.cfsmn.org.
On behalf of The CFIDS Association of America, we thank you for your support and encouragement in our efforts to conquering CFIDS.