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The CFIDS Monthly Update: May 2002

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www.ProHealth.com • May 6, 2002



THE CFIDS MONTHLY UPDATE

MAY 2002

TRAINING FOR HEALTH CARE PROFESSIONALS NOW AVAILABLE

The Association’s print-based self-study manual for health care professionals is now available to any health care provider (i.e. physician, nurse practitioner, physician’s assistant, registered nurse) who is interested in learning more about CFS and earning continuing education credits.

This manual provides a basic overview of CFS, and can be considered a “CFS 101” course. Content includes a brief history of the illness, facts on etiology, diagnosis and management, case study reviews, a bibliography and CFS related articles and publications. Participants are required to complete an evaluation and post-test to receive continuing education credits after
reading the manual. A score of 70% on the post-test must be received to successfully earn credits.

If you know of any health care providers who might be interested in receiving a copy of the manual, please contact Kasia Faryna at 704-364-0016 or by e-mail at meded@cfids.org. The grant which provides funding for this project is very specific in its guidelines that materials go directly to health care providers. At this time, the Association does not have the financial resources necessary to provide these materials to others at no charge. Copies of the manual are available to patients for $8, which includes shipping and handling.

The manual contents are in the public domain and therefore not copyrighted so additional copies can be made at your own expense, with the exception of the Komaroff and Natelson articles, which are copyrighted and cannot be reprinted without specific permission from the publisher.

Video and Web-based versions of the manual will be available in the near future. The content included in the Web-based format will be identical to the print-based format and thereby accessible to those with Internet capabilities.

MEDIA UPDATE

Thanks to pitching by The CFIDS Association, NewsProNet, a service that supplies broadcast footage to more than 100 local affiliates across the U.S., has prepared a story on pediatric CFIDS for May sweeps week. The story will feature interviews with Dr. David Bell, CFIDS Association President & CEO Kim Kenney and pediatric CFIDS patients.

Also due to the Association’s media outreach efforts, Fitness magazine ran a short mention of CFIDS in its May issue in honor of CFIDS Awareness Day (May 12). The capsule refers readers to www.cfids.org for more information and resources.

IT’S ANNUAL REPORT TIME AGAIN

The Association’s Annual Report, Leading the fight against CFIDS – 15 years, details last year’s accomplishments and overviews progress made in accelerating the fight against CFIDS over the past 15 years. It also gratefully acknowledges those who have made a financial contribution to support our vital work.

As always, Chairman’s Circle members will be recognized in the Annual Report. If you have not yet indicated how you wish to be acknowledged (or if you wish for your gift to remain anonymous) please contact Kim Almond as soon as possible at 704-364-0016, ext. 115 or at kalmond@cfids.org The Annual Report will mail in June and is available at no charge to all who ask. It will also be posted on the Association’s web site (www.cfids.org) this summer.

ASSOCIATION PRESIDENT & CEO SPEAKS AT THE COSMOS CLUB

On March 5, Kim Kenney lectured at Washington DC’s prestigious Cosmos Club about Chronic Fatigue Syndrome: A Daunting Challenge for Patient and Researcher Alike.

Since its founding in 1878, the Cosmos Club has adhered to its objectives: “The advancement of its members in science, literature and art.”

Ms. Kenney was invited to speak by club member and Association friend Rev. Bernard Hillenbrand, whose daughter, Laura – author of the best-seller Seabiscuit: An American Legend – has battled CFS for 14 years.

Following the presentation and a lively discussion, Rev. Hillenbrand and his wife Aliceann Wohlbruck hosted a reception in their home to “help further amplify public awareness of the devastating personal and public health consequences of this condition.” Thanks to Chairman’s Circle members Nina Hays and Sandy Solomon for attending the reception at the Hillenbrand home.

F. KENNETH IVERSON

F. Kenneth Iverson, a benefactor of The CFIDS Association of America and a former member of the Association’s Board of Directors, died April 14, 2002. He was 76.

Mr. Iverson served on the board from its inception in 1987 until 1998. He was the father of Association founder Marc Iverson.

Mr. Iverson was an internationally recognized businessman and visionary, serving as chairman of Nucor Corporation. Under his leadership, the company emerged from bankruptcy to become the nation’s most profitable and innovative steel manufacturer.

REDESIGNED YOUTH WEB SITE

The youth portion of www.cfids.org has a new look. Visit www.cfids.org/youth.asp to access vital information regarding CFIDS for children and families. And while you are there, enjoy the new
integrated design of the site.

INTERESTED IN PARTICIPATING IN A DOCTORAL PROGRAM STUDY?

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.


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 and recreation.

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 additional 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.

LET US KNOW HOW YOU RECOGNIZED CFIDS AWARENESS DAY 2002!

Each year the Association reports on CFIDS Awareness Day activities in an issue of The CFIDS Chronicle. And each year the list grows both in the number of patients participating, and in the unique ways in which CFIDS Awareness Day is marked. If you coordinated Awareness Day efforts, we’d like to hear from you! Please send your information to CFIDS Awareness Day Activities, PO Box 220398, Charlotte, NC 28222-0398; e-mail to lmoseley@cfids.org or fax to 704-365-9755, attn: Leah Moseley.

RECEIVE YOUR UPDATE VIA E-MAIL

Send your e-mail address to Kim Almond at kalmond@cfids.org and read the next issue of the Chairman’s Update online. You will recieve your update earlier via e-mail and help the Association save on printing and mailing costs!

NEW AT IGIVE.COM

Seasonal offers & liquidations available at http://www.igive.com/html/seasonaloffers.cfm. Check out this new page and save up to 80% every day on top name brands with 4% helping The CFIDS Association of America, Inc.!

THE FIBROMYALGIA COALITION FOR EDUCATION, TREATMENT AND SELF HELP

is sponsoring “Living with Fibromyalgia” on May 10-12, 2002 in Pembroke Pines, Fl.

This 2-day patient/medical conference is being made possible by a partnership
with the CFS/FMS Empowerment Discussion Group, Arthritis Foundation, Memorial Hospital West, several pharmaceutical companies and vendors. For more information, call Ms. Toni Jones or Jaylyn Medlin at 954-726-6707.

THE 2002 NATIONAL DYSAUTONOMIA RESEARCH FOUNDATION (NDRF) PATIENT
CONFERENCE

will be held July 18-20, 2002 in Washington, DC at the Omni Shoreham Hotel. The sessions will feature leading experts in autonomic research. All sessions will include opportunities for questions and answers. For information, contact NDRF, 421 West 4th Street, Suite 9, Red Wing, MN 55066-2555; by e-mail at ndrf@ndfr.org; by phone at 651-267-0525; or by fax at 651-267-0524.

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. Scheduled presenters include 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; by phone at 714-921-0150; or by e-mail at NFA@Fmaware.org.

IGIVE.COM

For a limited time, iGive is giving away FREE $5 donations for each new member who joins iGive and shops within 45 days. Tell your friends to join today by visiting http://www.igive.com/html/tellafriend.cfm


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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