The CFIDS Monthly Update August 2001
CFIDS Advocates travel to Washington, DC. The CFIDS Association’s annual Lobby Days were held June 20-21, 2001 in Washington, DC. CFIDS patients and people who care about them visited members of Congress to urge a more vigorous response to CFIDS from the government.
Lobby Day 2001 presented new challenges and opportunities for our meetings. America has a new President, a new Secretary of Health, and a new administration. Congress, too, has seen a great degree of change: there are 57 freshman members of the House and Senate, changes in key committee membership, and the retirement of the CFIDS community’s primary House champion, Rep. John Porter. Many of the people we met with were relatively new to the issue of CFIDS, yet the 63 advocates who attended Lobby Day spoke for over 800,000 Americans – CFIDS must be a federal priority given the magnitude of the illness and its impact on our communities.
The Association sincerely thanks those who are participating in Lobby Day events, those who wrote letters, e-mails or made phone calls to their representatives and those who coordinated CFIDS Awareness Day activities. Our public policy program is successful because of the strong grassroots foundation of the CFIDS community. Thank you for all of your efforts!
Association provides new materials to help parents reach out to school nurses. In June, the Association launched a project to increase awareness of chronic fatigue syndrome, CFS, among school nurses. Because school nurses observe the course of students’ and teachers’ illnesses, they are in a position to encourage the early diagnosis of CFS and to support families in coping with this chronic illness.
We are providing those interested in participating in the project an introductory letter to nurses and a copy of Dr. David Bell’s School Nurse News article on pediatric CFS that can be given to local school nurses. These materials are found on our youth website, www.cfids.org/youth/nurses/index.html. For those without Internet access, please send a business size self-addressed stamped envelope to The CFIDS Association of America, Attn: School Nurse Information, PO Box 220398, Charlotte, NC 28222-0398.
For more information e-mail Terri Lupton, BSS, RN, Coordinator for Educational Opportunities at firstname.lastname@example.org, or Rebecca Moore c/o the Association’s youth program at email@example.com. You can also call the Association’s Resource Line at 704/365-2343.
Redesigned web site online! The CFIDS Association of America’s web site, www.cfids.org has a whole new look and feel. The redesign involves much more than just a graphic facelift—it provides visitors with many new, valuable resources including an interactive questionnaire for people who think they might have CFIDS; areas dedicated to the unique concerns of parents of young persons with CFIDS and the newly diagnosed; a press kit for PWCs to use in their awareness efforts; sample letters and ideas for grassroots CFIDS advocates; archived Chronicle and CFS Research Review articles; and research briefs, treatment news, and medical question-and-answer documents for health care professionals and patients.
In addition, the Association added interactive features, such as our Quick Vote on CFIDS issues and access to daily “hot tips” for living with the illness. Coming soon is an improved e-commerce section, allowing visitors to renew their Association membership, order educational materials, and make tax-deductible donations. Visit www.cfids.org today!
Summer 2001 publications to mail in August. The Summer ’01 issues of The CFIDS Chronicle and The CFS Research Review will be mailed to current members mid-August. If your membership has expired or will be expiring within the next month, renew now to be sure you receive the upcoming issues. For specific information on your membership, please contact the Association by phone at 704/365-2343, by e-mail at firstname.lastname@example.org or by mail to The CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398.
Chronicle features include:
* An interview with Laura Hillenbrand, CFIDS patient and author of the national best-seller book “Seabiscuit: An American Legend,” a story about a legendary racehorse in the 1930s;
* An article on Dr. David Bell’s follow-up study of 35 children from Lyndonville, NY who were affected by an unexplained epidemic 17 years ago. This report confirms that they were suffering from CFIDS; and
* A Grassroots Lobbying Guide for patients and family members that will teach you how to bring the concerns of the CFIDS community to your elected representatives.
The CFS Research Review features:
* A report on the use of antidepressants in the treatment of CFS;
* An article on the visual dysfunction in CFS patients, which until recently has not been considered to be a major part of the illness; and
* Information for health care professionals on the follow-up survey of the children from the Lyndonville, NY epidemic.
Association welcomes two new staff members.
Mark Giuliucci joins the staff as Editor of The CFIDS Chronicle and The CFS Research Review. Mark has medical reporting experience in newspapers, magazines, and the Internet — his work has won nearly 20 awards from the Associated Press and other journalism groups. He has written or co-written more than a dozen consumer health care books, working with publishers such as Time-Life Books, Better Homes and Gardens and Rodale Press.
Julie Moss joins the Association staff as a part-time Information Technology Specialist. She is responsible for the Association’s computer network and internal database and will also help manage Web site-related projects and technical issues. Julie has more than five years of experience in the computer technology industry.
Help Identify Spokespeople! As part of its enhanced public relations efforts, The CFIDS Association of America is compiling a list of individuals across the United States who are willing/able to speak to the media about CFIDS. We would like your suggestions.
Spokespeople can be PWCs, medical professionals knowledgeable about the illness, or relatives/caregivers. They must be able to participate in interviews and share their experiences with CFIDS. Spokespeople are always contacted by the Association before a reporter is referred to them, to guarantee they will not receive unwanted media calls.
You do not have to find out whether someone would be willing to talk to the media before you suggest them as a possible spokesperson. The Association will contact each individual in advance to discuss their participation, offer the option of media training, and provide them with background materials.
Please send names and telephone numbers of potential spokespeople to Renee Brehio, Director of Communications: e-mail email@example.com, fax 704-365-9755, or The CFIDS Association of America, Attn: CFIDS Spokespeople, PO Box 220398, Charlotte, NC 28222-0398.
Cross country golf fundraiser to increase CFIDS awareness. Ben McFerron, a CFIDS patient, and his longtime friend Andy Bonn, will be golfing 50 golf courses in 50 states in 50 days. Calling this the “50-50-50 Golf Fundraising Adventure,” the goal of this trip is to increase awareness about CFIDS and help raise funds for The CFIDS Association of America. To find out more about their journey, visit www.505050.org.
Association’s 2000 Annual Report to mail in June. The CFIDS Association of America’s 2000 Annual Report was mailed to donors on June 22. This publication reports on the actions the Association took during the past year and overviews progress made in accelerating the fight against CFIDS. It also gratefully acknowledges those who have made a financial contribution of $50 or more to support our vital work. If you would like a copy, please call the Resource Line at 704/365-2343, send an e-mail to CFIDS@cfids.org, or visit the Association’s Web site at www.cfids.org.
CDC’s report on CFS Case Definition Workshop released. The Centers for Disease Control and Prevention, CDC, held a workshop May 20-23, 2001 to examine the current case definition for chronic fatigue syndrome. Their report, issued June 12, 2001, on this meeting is enclosed and can also be viewed at http://www.cdc.gov/ncidod/diseases/cfs/hot_topics/6-12-01.htm.
New resource directory being compiled. Chronic Relief Publications(tm) is putting together a list of services/resources offered for the disabled by each state in the US. If you have any information about what your state offers, please write to firstname.lastname@example.org or ChronicRelief@aol.com.
What they are looking for:
–Medicaid provisions, services, benefits, drawbacks, etc.
–State policy/resources available for in home assistance or attendants for disabled.
–HUD housing information, regulations, etc., for your state.
–Indigent prescription medication programs.
–Whatever else you deem appropriate about your state for sharing with others who are disabled.
Information received will be put on the Chronic Relief(tm) web site for all to access. Your name/email address will not be used. If, however, you want to act as a resource person for others in your state, please indicate so and give contact information for posting on the site with the state info.
Media Update – The CFIDS Association of America helped initiate and/or shape the following recent media coverage:
The June issue of Redbook includes a mention of CFIDS in the article “Adult diseases that threaten your kid.” The CFIDS Association of America worked with author Denise Poretto to present a realistic, sympathetic picture of the illness. The article, which features quotes from Dr. David Bell, describes symptoms, gives information on diagnosis and recommends supporting young people with CFIDS emotionally as well as physically.
On May 31, CNN featured CFIDS on its morning “Ask CNN” segment. Reporter Rhonda Rowland called the illness “debilitating and complex,” mentioned research into potential causes, and emphasized that only symptomatic treatment is currently available. A severely ill patient in a wheelchair was included in the video footage to emphasize how serious CFIDS can be. To view a video clip of the segment, go to http://www.cnn.com/CNN/askcnn/, click on “More Questions” in the Ask CNN Video list, then click on “What is chronic fatigue syndrome?”
Meetings of Interest
MYOPAIN 2001: Fifth World Congress on Myofascial Pain and Fibromyalgia will be held September 9-13 in Portland, Oregon. Hosted by the International MYOPAIN Society (IMS) and The University of TX Health Science Center at San Antonio, Continuing Medical Education Department, the 2001 Portland Congress will focus on the neurobiology of both myofascial pain and FM and will explore the link between these two common problems. For registration information, please call 210/567-4446 or e-mail DUNCAN@UTHSCSA.EDU.
The Well Informed CFS Patient: Opening Doors to Better Care, co-sponsored by CFS Association – Minnesota (CFSA-MN) and the American Association for Chronic Fatigue Syndrome (AACFS), will be held Sunday, October 28, at the Holiday Inn Select in Bloomington, Minnesota. For more information, please contact CFSA-MN at 651-644-4975.
On behalf of The CFIDS Association of America, we thank you for your support and encouragement in our efforts to conquer CFIDS.