CFIDS Association Update September 2001
August 31, 2001
THE CFIDS MONTHLY UPDATE
NAME CHANGE EXPLORED BY CFSCC WORK GROUP
Patients, family members, clinicians and researchers agree that chronic fatigue and immune dysfunction syndrome (CFIDS) needs a new name. But a working group assigned to address the issue recently reported that there remains no consensus about what that name should be.
The name change workgroup of the Department of Health and Human Services (DHHS) Chronic Fatigue Syndrome Coordinating Committee, which was appointed in summer 2000, recently solicited input on several alternatives. A questionnaire was distributed at the American Association for Chronic Fatigue Syndrome (AACFS) meeting in January, and then to a broader audience through several web sites and Internet listservs.
Support was almost evenly split between myalgic encephalopathy (ME), or some version of that name, and Neuro-Endocrine Immune Disorder (NEID). Less than 5% of survey respondents supported other names, such as polyalgic asthenia or Ramsay’s Disorder.
Most of the respondents appeared unwilling to compromise on the name. When those who picked either ME or NEID were asked if they would support another name, fewer than 30% said yes.
Based on input from the survey, the workgroup has concluded that the acronym NEID has too many negative connotations and should not be considered as a viable option. The workgroup will continue to search for alternatives to “NEID,” and will solicit other information from stakeholders as it develops recommendations regarding the name change issue.
The subject will be discussed in detail at the next CFS Coordinating Committee meeting, which has yet to be scheduled. For details, visit the Patient Advocacy section of the Association’s Web site, www.cfids.org.
An article on PWC Laura Hillenbrand, author of best-selling novel “Seabiscuit: An American Legend,” appeared in the July 23 issue of USA TODAY. The article emphasizes that CFS is an extremely debilitating illness, and focuses on the toll writing the book has taken on Hillenbrand’s health. The article also gives an overview of CFS, including major areas of research, and notes that only 10% of individuals with the illness are actually diagnosed. Hillenbrand is quoted as saying, “How can chronic fatigue describe a disease where you cannot sit, eat, walk?”
To view the article, go to www.usatoday.com and click on Archive under Print Edition in the left menu. You will need to enter the search term “chronic fatigue.”
Our redesigned e-commerce area is up and running. Visit www.cfids.org and click on one of the new shopping graphics located on the home page and on the left navigational bar throughout the site. Once there you can renew your membership, purchase educational materials or make a tax-deductible donation.
CFIDS INFORMATION PROMINENTLY DISPLAYED AT HEALTH CARE PROVIDER CONFERENCES NATIONWIDE.
In partnership with the Illinois Area Health Education Center, The CFIDS Association of America launched an ambitious health care provider education project, “CFS: A Diagnostic & Management Challenge.” One of the five components of the project is an 8 x 10 foot conference exhibit designed to help focus attention on the complexities of the illness. Since March of this year, the exhibit has been featured at the national conferences of various provider groups including:
-American College of Physicians / American Society of Internal Medicine
-American Academy of Physician Assistants
-American Academy of Nurse Practitioners
-National Conference for Family Physician Residents and Medical Students
According to health educator Terri Lupton, BSS, RN, who joined the Association’s staff in July 2000 and serves as project coordinator, response to the exhibit has exceeded expectations. She’s met with hundreds of health care providers, discussed the complexities of the illness and provided information and materials about the detection, diagnosis and management of CFS.
The exhibit component of the project has proven to be a valuable way to reach those on the front lines of patient care and stimulate interest and curiosity about the unique challenges of CFS. Before year-end, Terri and the CFS exhibit will travel to two other conferences, including the American Academy of Pediatrics conference in San Francisco this October.
CROSS COUNTRY GOLF FUNDRAISER POSTPONED.
Last month we shared news of Ben McFerron and Andy Bonn’s 50-50-50 Golf Fundraising Adventure planned to increase CFIDS awareness and generate donations to support the work of The CFIDS Association of America. Unfortunately, an automobile accident halfway through their 50 state trek sidelined their valiant effort to help those who, like Andy, suffer from CFIDS. Ben and Andy are certainly disappointed they were unable to complete their trip, but they are not giving up!
The 50-50-50 golf fundraising adventure is scheduled to begin again in summer 2002. Ben and Andy are dedicated to accomplishing the goals that they set for their adventure – to raise funds for The CFIDS Association of America and to educate the public about the illness. If you are interested in learning more about or finding out how you can help the 50-50-50 Golf Fundraising Adventure, visit www.505050.org.
A MESSAGE FROM THE CHAIRMAN, JON STERLING
I’m pleased to report that through July 31st, The Chairman’s Circle has raised $45,747 for CFIDS education, public policy and research this year. Given our individual monthly gifts, I estimate that we will contribute over $78,000 in 2001 to support The CFIDS Association’s vital efforts aimed at eradicating CFIDS. Congratulations and thank you!
Yet I believe that we can raise more, accomplish more and make a more significant difference in the lives of people struggling with the illness. With that, I ask every Chairman’s Circle member to help me push that
total to $100,000.
Please consider increasing your monthly pledge by $3, $5, $10, $20 or whatever you can afford. You can also help by asking a friend to match your monthly pledge or by recruiting a fellow support group member to The Chairman’s Circle.
$100,000 is a tremendous challenge, but I believe that The Chairman’s Circle can make that goal a reality and help bring an end to the suffering caused by CFIDS. For more information or to increase your pledge amount, send an e-mail to firstname.lastname@example.org or call the Resource Line at 704-365-2343.
GOT A TIP? LET US KNOW!
The CFIDS Association of America’s Web site, www.cfids.org, now has a whole new look. However, the redesign is much more than just a graphic facelift -- the site provides visitors with many new and valuable resources. We’ve added interactive features such as a way to vote on current CFIDS issues and access to daily “hot tips” for living with the illness.
And we’d like your help with the “hot tips” feature? Please send us your advice and tips for living and coping with CFIDS. Examples of past Patient-to-Patient “hot tips” include:
“Carefully examine your life insurance policy for a clause that waives future premiums, should the owner become disabled. My claim was approved quickly and I received a year of back premiums too!” S.D., Carneys Point, New Jersey
“Talk with your health care provider before trying anything new.”
P.S., Erdenheim, Penn.
Send your Patient-to-Patient Hot Tips to email@example.com and let us know how you want to be identified. (i.e. first name, city, state; or initials, city, state) All submissions are gratefully accepted and considered however we can not guarantee the publication of every submission.
AMERICAN MEDICAL NEWS
At the urging of The CFIDS Association, American Medical News, the weekly newspaper of the American Medical Association, ran an article on CFS in their July 23 issue. The publication has a circulation of more than 230,000, mostly physicians. The article treats CFS as a real illness, quoting Dr. Anthony Komaroff as saying, “It is pretty clear there are objective biological things wrong.” It also points out that CFS patients may test at normal levels on many general blood screening tests for illness and cautions physicians not to attribute all a patient’s complaints to CFS. Dr. William Reeves of the CDC is quoted as saying “Women with CFS can get breast cancer just as well as those without.”
To view the article, go to http://www.ama-assn.org/sci-pubs/amnews/pick_01/hlsa0723.htm or visit the publication’s Web site at http://www.ama-assn.org/public/journals/amnews/amnews.htm and click on the July 23 issue.
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 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,
a conference 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. Featured presenters include Dr. Benjamin Natelson, Dr. Leonard Jason,
Dr. Charles Lapp and Donald Uslan. Barbara Comerford, JD will discuss disability issues such as Social Security Disability and ERISA. For more information, contact CFSA-MN at 651-644-4975.
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