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Support groups build awareness

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By Kris Hopkins • • December 20, 2001

This article is reprinted with permission from the CFIDS Chronicle Vol. 12 No. 4 July/August 1999.

May 12 is an important day in the lives of persons with chronic fatigue and immune dysfunction syndrome (PWCs). That date is International CFS/CFIDS/M.E. Awareness Day, a time to come together with a single voice to educate the world about this serious and debilitating illness. Local support groups, state associations and individuals all participate. 1999 marked the seventh observance of International Awareness Day, and our message is getting stronger and clearer.

An exciting Lobby Day

On May 12, The CFIDS Association of America sponsored the 1999 CFIDS Lobby Day in Washington, D.C. A group of 67 advocates—patients, family members and friends—gathered, representing support groups and CFIDS organizations in 18 states. They visited the offices of their congressmen and senators to deliver the Association’s appropriations requests. By representing PWCs back home, these advocates communicated to their members of Congress how this illness damages lives. They put a name and a face on this often invisible illness.

Although this is an exhausting experience—both physically and financially—for persons with CFIDS (PWCs), they come away with the wonderful feeling that they are making a difference in the lives of CFIDS patients. When Lobby Day was first held, most Congressional staff members had no idea what CFIDS was. They may have heard of the “Yuppie Flu” and thought that people with this illness were just tire, depressed or burned out. This year however, the majority of the staff members that our advocates met with had some understanding of CFIDS and were interested in learning what their offices could do for their constituents. What a difference 7 years has made!

Amazingly, as these 67 advocates were taking their message to Capitol Hill, the Inspector General’s (IG) report on the Centers for Disease Control’s (CDC) misspending of CFIDS research money was published, a full month before it was expected to be released. With the anticipation of children in a candy store, the advocates went from meeting to meeting asking Congress staffers to view the on-line version of the report. The IG report confirmed our suspicions that the CDC had misspent funds appropriated for CFIDS research.

Signs are everywhere

The excitement of CFIDS Awareness Day 1999 was felt around the world. Activities ranged from letter writing campaigns to displays in libraries, malls and hospitals to a banner and quilt made out of sections that were decorated by CFIDS patients. Each person, group and organization worked towards the same goal: To increase awareness of CFS, CFIDS, myalgic encephalomyelitis, fibromyalgia, multiple chemical sensitivities syndrome, Gulf War syndrome and other related disorders and to honor those who could not speak for themselves.

The list below of 1999 Awareness Day activities is by no means inclusive of all the efforts undertaken by CFIDS patients, family members and friends. There were many, many other activities no less important. On behalf of the Association, we send our heartfelt thanks and gratitude for the grassroots efforts of the CFIDS community. This national organization would stand alone if it were not for our members. At this time each year, we take this opportunity to honor you, as persons with CFIDS, for all that you do to better your lives and the lives of others.

Individuals and local groups:

Two members of The Central Florida CFIDS Support Group were interviewed for a TV news story about CFIDS. Also, group members wrote letters to Congress during their April meeting; letters and CFIDS information packets were distributed to local bookstores and libraries requesting an Awareness Day display; group members distributed information to health food stores and physician offices; group pledged to continue spreading awareness 365 days a year “not by going out of our way, but by perceiving each day as an opportunity” to increase knowledge on CFIDS.

The CFIDS Community Center of Broward County, Fla., contributed over 20 decorated pillowcases to the WECAN banner project; sent letters to Members of Congress; received a CFIDS Awareness Day proclamation from Governor Jeb Bush; and made CFIDS Awareness t-shirts and velvet blue ribbons.

The CFIDS Network of Baltimore, Md., helped with a 20-minute spot on a local news program in which support group members and Dr. Peter Rowe from Johns Hopkins were interviewed. Kieth Rippey, a support group member, Dr. Marsha Wallace, and Tom Hennessey of RESCIND participated in a live call-in segment. The group was represented at Lobby Day by support group member Robin Keyes.

The CFIDS Support Group of Northern Nevada and the Sierra sent letters and E-mails and made calls to their Congressional representatives. Support group members Lisa Foremaster, Karen Lang and Bob Patton traveled to D.C. to represent the concerns of Nevada CFIDS patients during Lobby Day. The group received a Senatorial Recognition award for “exemplary performance and outstanding achievement” from Sen. Richard Bryan, and former leader Lea Rhodes also received a Senatorial Recognition award for developing and facilitating an award-winning support group from 1992-1997.

The CFS Association of Lehigh Valley, Pa., received separate CFIDS Awareness Day proclamations from the Governor’s office, the State Senate (sponsored by Sen. Charles Den and Sen. Lisa Boscola) and the State House of Representatives (sponsored by The Hon. Robert Freeman). Support group leader Priscilla deLeon represented the group at Lobby Day.

The CFS/FM Support Group of Bloomington/Normal, Ill., wrote a letter to the physician-patient advocate of the local medical society.

The CFS/FM Support Group of Dallas and Fort Worth, Texas, initiated a Texas House of Representatives resolution recognizing May 12 as CFIDS Awareness Day. Harris Methodist HEB Hospital paid all travel expenses for their community relations manager and support group leader Carol Sieverling to fly to Austin for its adoption. The group, along with Harris Methodist HEB Hospital and the City of Irving’s Public Health Department, co-hosted Dr. Paul Cheney for a three-hour seminar on CFIDS. Several people attending the seminar were interviewed by a local TV cable station, and a group member was interviewed by a local Spanish TV station.

Faith Wong of the Utah CFIDS Association, Utah, worked with the Community Health Information Center at McKay-Dee Hospital to display a CFIDS poster and distribute brochures during May. She also handed out blue ribbons and CFIDS information to school nurses and TV stations in the Salt Lake City area; circulated “Electronic March on Washington,” a public awareness message about CFIDS with the Association’s web address and information on how to lobby legislators to friends and family; and got Awareness Day information published in the “Upcoming Events” section of the Standard Examiner.

The Greensboro CFS/FMS Support Group of North Carolina supported the WECAN banner project by sending in several sections with the names of 48 support group members.

The Manasota CFS/CFIDS Support Group of Florida set up display tables at three locations, and a member’s letter was published in the Bradenton, Fla., newspaper.

The Miami/Coral Gables CFIDS Support Group, Fla., co-sponsored the 1999 Research Update which featured Drs. Nancy Klimas and R. Roberto Patarca, and encouraged members to write to Congress.

The River Falls CFS/FMS Support Group of Wisconsin was represented at Lobby Day by member Mimi Trudeau. The group sponsored a seminar featuring keynote speaker Sefra Pitzele, author of We are not Alone, When Someone You Love Has CFS/FMS, and others.

The Southside CFIDS/FM Support Group of Famville, VA., set up a CFIDS display at the Heart of Virginia Festival on May 1. As part of the display, two empty chairs with signs on them explaining that “whoever” might have sat in these chairs, whether they had CFIDS or FM, were too ill to man the table during the daylong event.

The Springfield/Holyoke MA CFIDS Chapter displayed CFIDS info at the Holyoke Public Library and the information center at the Holyoke Mall. The group sent a pillowcase with the motto “Limping Along, but Ten Years Strong!” to D.C. for the WECAN banner project.
St. Joseph’s Regional Hospital’s FMS/CFS Support Group, Texas, worked with the hospital’s education department to send a copy of the Texas State Legislature’s Resolution for CFIDS Awareness Day to all doctors associated with the hospital.

Greater Tallahassee FMS & CFS Outreach Group of Florida set up a CFIDS display table during the National Senior Health and Fitness Day on May 26 at the Tallahassee Mall in conjunction with the Tallahassee Community Hospital.

State and International Groups:

The Connecticut CFIDS Association State of Connecticut Department of Public Health issued a press release recognizing May 12, 1999 as CFIDS Awareness Day.

CFIDS New Mexico set up a display table at the Wild Oats Health Food store and distributed information packets to local hospitals.

The Vermont CFIDS Association received State and Cit of Burlington proclamations recognizing May 12 as CFIDS Awareness Day; sponsored a presentation addressing the relationship between chemical sensitivities and other complex chronic illnesses such as FM, CIFDS, and Gulf War Syndrome; and encouraged support group members to contact members of Congress.

The Wisconsin CFS Association received a state CFIDS Awareness Day proclamation from the Governor; mailed ME/CFS information packets to 3,000 internists; participated in the WECAN pillowcase banner; contacted health editors state-wide; organized information tables in several cities to distribute medical articles, brochures and information on the overlap of MCS/FM; and sent rememberances, letters and buttons to advocates participating in Lobby Days.

WECAN, the Worldwide Electronic CFIDS/ME Action Network, coordinated the creation of a banner made out of pillowcases and decorated by PWCs nationwide. The banner was to be displayed during CFIDS Awareness Day activities in Washington, D.C.

The ME/CFS Society of Queensland, Australia, conducted a “Blue Ribbon Raffle” to raise money for patient services and set up information tables at two local malls.

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