The CFIDS Monthly Update: June 2002
June 3, 2002
ASSOCIATION LEADERSHIP SHARES CONCERNS ABOUT STATUS OF CFS COORDINATING COMMITTEE.
We join other advocates in expressing great frustration with regard to the dormant status of the Department of Health and Human Services committee on chronic fatigue syndrome. The most recent meeting of the DHHS CFS Coordinating Committee (CFSCC) was January 30, 2001, 17 months ago. At that meeting the Department stated its intention to form a CFS Advisory Committee, consistent with recommendations made by the General Accounting Office. To date, the new committee has not been formed and members of the CFSCC have not received any formal communication about a continuing role with the Department’s activities on CFS.
All but one of the seven federal representatives to the CFSCC have either left government service or have taken new positions within their respective agencies. Terms for four of the seven public members of the CFSCC have now expired. So, it is unclear whether it is even possible to convene the CFSCC while we press for DHHS to convene the new advisory committee.
Inquiries from several members of Congress have been made of Secretary for Health Tommy Thompson regarding the status of the new committee, largely as a result of the Association’s March 22, 2002 Lobby Day meetings with legislators. We have made repeated requests to DHHS over the past year to move this matter forward. We also remain in regular contact with department staff working to facilitate the formation of the CFS advisory body and encourage others to do the same.
Jon B. Sterling, Chairman, The CFIDS Association of America, Member, DHHS CFSCC
K. Kimberly Kenney, President & CEO, The CFIDS Association of America, Member, DHHS CFSCC (expired)
LAURA HILLENBRAND APPEARS IN ADVERTISEMENT
In the June issues of Conde Nast publications, such as Glamour, Allure, Self and Vanity Fair, author and CFIDS patient, Laura Hillenbrand will be prominently featured in a Pond’s ad. The ad is a special advertising section for Pond’s Dramatic Results skin care line (aimed at reducing lines and other signs of aging), and announces the company’s “Skin Deep Contest.” Readers can send in short essays and a photo of an individual whose beauty goes beyond the physical and is based on a lifetime of achievement – the winner gets a trip to New York, a photo shoot with a top photographer and other prizes. The text with Laura’s photograph, which is on the second page of the ad, mentions that her will to live has been challenged by her fight with chronic fatigue syndrome, and that she has suffered through years of incapacitating exhaustion and vertigo.
ARTICLE ON GENERAL MILLS WEB SITE
The CFIDS Association of America has distributed a camera-ready print article to local newspapers across the United States through the North American Precis Syndicate (NAPS).
The article, which is the first in a series of three, has appeared in more than 50 newspapers in 22 different states with a combined readership of more than 28 million. Recently General Mills, a well-respected Fortune 500 company, decided to include a copy of the article on their web site for Yoplait yogurt.
To view the article on the General Mills site, go to
To send an e-mail thanking General Mills for including CFIDS in their health information, go to http://www.generalmills.com/yoplait/gen/contact.asp
INDEPENDENT LIVING CENTER STUDY CALLS FOR CFIDS PATIENTS
The Research and Training Center on Full Participation in Independent Living (RTCFPIL), was awarded a grant by the National Institute on Disability and Rehabilitation Research (NIDRR) to determine how well people with disabilities are able to live independently and participate in their communities.
The survey tool they will be using includes input from a workgroup of nationwide disability advocates and addresses a variety of issues, including employment, transportation, housing, education, health care, recreation, etc. Using the Consumer Concerns Report Method, they are conducting the survey to learn directly from persons with disabilities about participation in their communities.
This information will be used to craft a research agenda that is based on feedback from the disability community. Their goal is to solicit as many responses to their survey from people with disabilities and chronic health conditions across the nation as possible.
For more information or to obtain a paper copy of the survey, call 800-255-3555 and ask about the R-One survey. You can also access the survey by visiting www.rtcfpil.org/survey.htm. The results of this survey will be posted on their Web site, www.rtcfpil.org/surveyresults.htm in the fall of 2002.
ANNUAL FUND UNDERWAY
For over 15 years The CFIDS Association of America has provided information, support and encouragement to people suffering from chronic fatigue and immune dysfunction syndrome (CFIDS) and has worked toward establishing greater credibility and acceptance of CFIDS as a serious medical condition with a crushing impact on the individual and those around them.
Although many things have changed since 1987, the Association remains solidly committed to the mission it was built upon and today moves forward as the leading national organization working to conquer CFIDS.
Our programs are supported primarily by persons with CFIDS, those that care about them, family foundations and corporations. We rely on charitable contributions and membership dues to sustain vital education, public policy and research activities.
The 2002 Annual Fund is currently underway -- please generously support this year’s campaign and help accelerate efforts aimed at eradicating this devastating and life-changing illness.
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,” which will include personal accounts of adjustments, compromises, and sacrifices women with FM must make in their everyday lives as a result of being diagnosed with and living with this debilitating disease.
The author 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. If you fit this description, Mari would love to hear from you. 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. Or call 206-932-6652, between
10 am and 9 pm PST.
“THE POLIO PARADOX” NOW AVAILABLE
In his new book, “The Polio Paradox: Uncovering the Hidden History of Polio to Understand and Treat ‘Post-Polio Syndrome’ and Chronic Fatigue,” Dr. Richard Bruno, Director of The Post-Polio Institute, the International Centre for Post-Polio Education and Research and the Fatigue Management Programs at New Jersey’s Englewood Hospital and Medical Center, reveals the cause and treatment of Post-Polio Sequelae.
In his book, Dr. Bruno depicts polio as a disease of paradoxes, the most painful being that the therapies and “use it or lose it” lifestyle that allowed survivors to recover from the polio attack decades ago are actually causing new symptoms called Post-Polio Sequelae, the “sequel” to having had polio: overwhelming fatigue; leg and arm weakness; burning muscles and joints; head, back and neck pain; trouble sleeping, breathing and swallowing.
The book also describes the remarkable 20 year history of chronic fatigue outbreaks that occurred at the same time as the polio epidemics and the uncanny similarities between PPS, chronic fatigue syndrome, myalgic encephalomyelitis and Fibromyalgia. Dr. Bruno’s research suggests that as many as half of those diagnosed with chronic fatigue syndrome today – the “baby boomers” born before the discovery of the polio vaccine – may have had a mild case of polio in childhood and actually have PPS, not CFS.
“The Polio Paradox” offers facts and real solutions for polio survivors, those with CFS, ME and FM – as well as anyone with a long term disability – and provides a ringing wake-up call for their doctors. This book provides a blueprint for emotional and physical well-being for those who want to understand and manage chronic fatigue and pain, improve their quality of life and not just survive but thrive.
Additional information on PPS and its connection with CFIDS is available at www.postpolioinfo.com. To purchase or just to learn more about “The Polio Paradox: Uncovering the Hidden History of Polio to Understand and Treat ‘Post-Polio Syndrome’ and Chronic Fatigue,” by Dr. Richard Bruno visit: http://www.twbookmark.com/books/46/0446529079/index.html
“I REMEMBER ME” DOCUMENTARY AVAILABLE ON HOME VIDEO
Zeitgeist Video is proud to announce that Kim Snyder’s groundbreaking documentary “I Remember Me” is available for purchase on VHS by calling Media Library at 800-343-5540. The cost is $30.99, plus
shipping and handling charges. Please call between 9am and 5pm EST and specifically request “I Remember Me.” Or visit http://www.zeitgeistvideo.com/irememberme/irm.html.
Elizabeth Karlsberg of the Santa Barbara News-Press wrote that “I Remember Me” “demystifies chronic fatigue syndrome with a compelling, almost palpable force. Anyone who has ever endured any difficulty in his or her life-disease or otherwise – will not only appreciate ‘I Remember Me’ but be forever touched by the experience.”
Special note regarding group screenings: If you wish to purchase the videotape to show to a large group (10 people or more) you need to purchase it with public performance rights directly from Zeitgeist Films. Please call Clemence at 212-274-1989 or e-mail email@example.com. The same applies if you want to purchase “I Remember Me” for educational, institutional or library use.
Please note that these VHS tapes are only available for sale within North America. The VHS tapes are NTSC format. If you are outside North America please visit www.irememberme.com information on availability in other countries.
RADIO RELEASE AVAILABLE
The CFIDS Association sent out a radio release on CFIDS to more than 6,000 U.S. radio stations for awareness day. If you would like to receive a transcript of the release (in Word format) for use in your own awareness efforts, send an e-mail to firstname.lastname@example.org or call the Association’s Resource Line at
IGIVE HAS EXTENDED ITS OFFER
Free $5 bonus for each new shopper until June 30, 2002! Time is running short don’t miss out on this opportunity. Refer your friends and family directly to
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 Brigham Young University in Provo, UT and is currently looking for individuals willing to participate in her study.
Research materials will be mailed in June 2002 (through “snail mail”) and should require about 30 minutes to complete. About 300 responses are needed for a “respectable” research study. The only requirement for participants is a medical diagnosis of Fibromyalgia (FM) or chronic fatigue immune dysfunction syndrome, (CFIDS).
Peggy herself has experienced a variety of chronic illnesses, including FM and CFIDS. For 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.
AMERICAN FAMILY PHYSICIAN (AFP)
The clinical journal of the American Academy of Family Physicians, published an article on CFIDS in March 2002. The article provides physicians with information on evaluation, possible causes and management of CFIDS. It mentions exercise and CBT as potentially effective treatments. AFP has more than 100,000 subscribers, including general practitioners, internal medicine specialists and osteopathic physicians.
To view the article, go to http://www.aafp.org/afp/20020315/1083.html. To comment on the article, send an e-mail to Janis Wright, managing editor, at email@example.com
THE NATIONAL ME/FM ACTION NETWORK
will host the first international symposium on the “Parallels between Post-Polio Sequelae (PPS), Myalgic Encephalomyelitis/chronic fatigue syndrome and Fibromyalgia on June 15, 2002 from 1pm-4pm at the Holiday Inn Hotel and Suites Toronto-Markham in Ontario.
Featured researchers include Dr. Elizabeth Dowsett, a leading British ME researcher and Dr. Richard L. Bruno, an expert on PPS. For registration information, please contact Mary Ellen at PO Box 66172, Town Center Postal Outlet, 1355 Kingston Road, Pickering, Ontario, Canada L1V 6P7; by phone at 905-831-4744; or by e-mail at firstname.lastname@example.org.
THE MIAMI CORAL GABLE CFIDS SUPPORT GROUP IS PROUD TO PRESENT THE CFIDS 2002 UPDATE
Featuring, Dr. Nancy Klimas on June 21, 2002 from 1pm to 4pm at the Miami Fire Headquarters in Miami, FL. For more details, contact John Hall at 305-226-5346.
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, a nationally known speaker on coping with chronic illness.
For more information contact CFSA-MN toll-free at 866-644-4975; by fax at 651-644-3023; by e-mail at 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.
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