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The CFIDS Monthly Update: March 2002

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www.ProHealth.com • March 1, 2002


THE CFIDS MONTHLY UPDATE

MARCH 2002

CFIDS PSA RELEASED

The CFIDS Association of America has released the first national public service announcement (PSA) on CFIDS for television, featuring former U.S. Surgeon General Dr. David Satcher. The PSA emphasizes that CFS is a serious, complex disorder that can affect people of all races and walks of life. Dr. Satcher validates the illness, saying that “We may not know the cause of [CFIDS], but the pain and suffering are real.”

Background

Since 1995, CFIDS patients have been asking the U.S. Department of Health and Human Services (HHS) during meetings of the CFS Coordinating Committee (CFSCC) to fund and distribute a PSA on the illness.

In late October 2001, HHS agreed to lend their studio for the taping of the video footage of Dr. Satcher and of several local Washington, D.C. CFIDS patients. Unfortunately, shortly thereafter Dr. Satcher announced that he would be leaving office in February 2002, imposing a severe time limitation on production of the PSA. HHS did not provide funds for production and distribution, but the Association rose to the task.

With help from Jon Sterling, Chairman of the Association’s Board of Directors and the guiding force behind the PSA, the Association’s public relations firm and a producer for a national news program who was willing to edit the video footage pro bono, the PSA was completed for release.

To view the 30-second PSA, visit the Association’s Web site at http://www.cfids.org/about/psa-intro.asp.

Distribution

A media alert announcing the availability of the PSA on CFIDS was sent to more than 500 television stations across the nation. Broadcast-ready tapes are also being mailed to a select group of reporters.

Patients are invited to give the Association names of television reporters or producers in their local area who have shown a previous interest in CFIDS, so that we can ensure they are notified about the PSA. Send your suggestions to rmbrehio@cfids.org

Transcript Availability

The Association’s CFIDS PSA can be adapted into radio or print PSAs that can be distributed locally. If you would like a copy of the PSA script to use in awareness efforts, please send an
e-mail to lmoseley@cfids.org or call the Resource Line at 704-365-2343.

OLYMPIAN SPEAKS OUT ABOUT HER BATTLE WITH CFIDS

Short track speedskater, PWC and 2002 Winter Olympics competitor Amy Peterson has been making the media rounds lately and talking about her battle with CFIDS.

A five-time Olympian, Peterson has been outspoken about her difficult comeback road following the onset of CFIDS five years ago. She has emphasized that she can barely get out of bed on some days, and that the illness has made her competition performance hit or miss.


Peterson’s teammates chose her to carry the U.S. flag into the Winter Olympics opening ceremony, which has gained her even more visibility. She was most recently interviewed on the “Today” show about the challenges that CFIDS has posed.

For a transcript of the interview, visit The CFIDS Association of America’s Web site at: http://www.cfids.org/resources/today-transcript.asp or call the Association’s Resource Line at 704-365-2343.

FORGET ME KNOTS

In honor of Awareness Day 2002, Cure, Hope, Advocacy, Research and Global Education, Inc. (CHARGE) and the New York Support Network, Inc. (NYSN) are creating a quipu to represent the years CFIDS patients have lost to Fibromyalgia, CFIDS and related disorders.

A quipu is the way the people of the Andes kept records using knots tied in cotton cord. Generally there was a main cord off which other cords hung, each cord containing a series of knots representing numbers. CHARGE and NYSN will have a main ribbon that will be used to hang patients’ ribbons from. Patients are asked to send a ribbon tied with one knot for each year they have been ill.

They hope this visual aid will help others see how many lives have been affected and how many years they have endured the debilitating symptoms of their illnesses. For more information, visit CHARGE’s Web site, http://chargeinc.org/ap2002.html or send an e-mail to info@chargeinc.org.

To receive a printed version of their flyer, call the Association’s Resource Line at 704-365-2343 and request information on the “Forget Me Knots” Project. Deadline to participate is April 15.

The CFIDS Association of America participated by sending in a ribbon with 15 knots – a knot for each year the Association has worked on behalf of CFIDS patients and their families.


THE TORTOISE PROJECT

The idea of this campaign is to encourage people who don’t have CFS/ME to send an Awareness Day card to their friends & family members who are living with CFS/ME.

For more information visit www.techno.net.au/~joy/tortoiseproject.htm, send an e-mail to shlokit@techno.net.au or write to c/-185 Hight Street, Northcote 3070, Victoria Australia.

ONLINE CFIDS/ME AWARENESS DAY CARDS

Blue Mountain.com is offering two CFIDS Awareness Day cards this year. New in 2002 is a card created by Judy Bennett, an artist with CFIDS, who hopes to remind others that they can still have quality of life and can achieve their dreams in spite of having this chronic disease.

View both cards at http://free.bluemountain.com/cdb/AWA/HTH/index.html.

“SEABISCUIT” A FINALIST FOR NATIONAL BOOK CRITICS CIRCLE PRIZE

Author and PWC, Laura Hillenbrand, recently learned that her best-selling book “Seabiscuit: An American Legend” was selected as a finalist for a 2001 National Book Critics Circle Prize in the general nonfiction category. For more information, see the National Book Critics Circle Web site at http://www.bookcritics.org.


STATISTICS ARE FAVORABLE FOR CONTINUING DISABILITY REVIEWS

Many CFIDS patients currently receiving Social Security disability benefits are concerned about undergoing a Continuing Disability Review (CDR). The CDR system is used by the Social Security Administration (SSA) to ensure that people are still disabled a few years after their benefits are awarded.

Statistics for 2000 (the most recent data available), report that SSA allowed 93% of all people undergoing a CDR to remain on benefits. Of the 7% who lost their benefits on CDR, about half appealed the denial, and of those who appealed, 49% had their benefits reinstated on reconsideration (the first level of appeal).

So what does this mean? If you are receiving SS disability benefits and are required to undergo a CDR, the odds are in your favor that your benefits will not be terminated. To help your case, it’s important to continue seeing your doctor to document your disability throughout the course of your illness. The major cause of terminating benefits is lack of data in the patient’s medical record, so it’s especially important for people on SSDI and SSI to see a doctor regularly.

THE CONNECTICUT CFIDS/FM ASSOCIATION, INC.

will be hosting well-known practitioner and researcher, Dr. Harvey Moldofsky on April 6, 2002 at the University of Connecticut Health Center. Dr. Moldofsky will be speaking on sleep dysfunction in both CFIDS and FM. For additional information, please write to The CT CFIDS/FM Association, PO Box 3010, Milford, CT 06460 or call 800-952-2037.

THE NEW JERSEY CFS ASSOCIATION (NJCFSA)

will hold their Spring 2002 conference on April 27, 2002 at the Robert Wood Johnson Univ. Hospital in New Brunswick, NJ. Featured speakers include Dr. Charles Lapp internal medicine practitioner at the Hunter Hopkins Center in Charlotte NC, and Clinical Associate Professor of Family Medicine at Duke University, Dr. Gudrun Lange of the NJ CFS/FM Cooperative Research Center, Dr. Richard Podell of Robert Wood Johnson Medical School and primary investigator in the Ampligen trials and Dr. Kenneth Freidman, contributing author of the Physicians Manual on Diagnosing and Treating CFS. To pre-register, contact NJCFSA at
973-635-4361.

THE NATIONAL FIBROMYALGIA PARTNERSHIP, INC.

will host a patient-oriented conference in Orlando, Florida, May 3-5, 2002. For more information please visit www.fmpartnership.org or call 866-725-4404. Speakers include post-traumatic FM expert Thomas Romano, MD, PhD; FM aquatics expert Mary Essert; mycoplasma expert Prof. Garth Nicolson, MD; FM researcher Roland Stuad, MD; and expert FM attorney Scott Davis. A session on juvenile FM will also be presented.

THE FIBROMYALGIA COALITION FOR EDUCATION, TREATMENT AND SELF HELP

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

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.


On behalf of The CFIDS Association of America, we thank you for your support and encouragement in our efforts to conquer CFIDS.



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