By Kris Hopkins
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
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. (See letter in
"Readers' Forum" this issue.) 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 tired, 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 seven years has made!
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. For more
on this report, see "DC Dispatch" this issue.
Signs are everywhere
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 snydrome and
other related disorders and to honor those who could not speak for themselves.
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:
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.
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. Keith 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 CFIDS/FMS Support Group of Rockland County,
N.Y., was represented at Lobby Day by member Suellen Tritt. The group compiled a book of CFIDS/FM stories
titled Impact Book, which was shared with their representatives to show how these illnesses have
affected their lives.
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
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
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.
Miami/Coral Gables CFIDS Support Group, Fla., co-sponsored the 1999 Research Update which featured
Drs. Nancy Klimas and Dr. Roberto Patarca, and encouraged members to write to Congress.
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.
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.
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
State and international groups:
Connecticut CFIDS Association
State of Connecticut Department of Public Health issued a press release recognizing May 12, 1999, as CFIDS
CFIDS New Mexico set up a display table at the Wild
Oats Health Food store and distributed information packets to local hospitals.
CFIDS Association received State and City 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, CFIDS, 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 remembrances, letters and buttons to advocates participating in Lobby Days.
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.
Kris Hopkins is Support Network Services Director for The CFIDS Association of America. She is
in her ninth year of service to the Association.
Piecing together lives touched by CFIDS
Susan Best first announced her Lobby
Day Quilt project
in the September/October ‘98 issue of The CFIDS Chronicle. Eight months later, this beautiful
quilt is an 11-by-17-foot work of art with over 200 squares designed by CFIDS patients across the country.
The pieces, which Susan describes as a "motley crew," range from very sophisticated work to a name penned
on an old piece of pajamas.
Susan wrote in her letter to the Association, "Without exception,
everyone who made the effort sent me their best wishes, thanks and encouragement. I am very grateful to
each and every one of them. My eyes have teared up many times when I read their notes, looked at their
ages and how long they have been suffering--especially the children... I truly feel ‘supported’ by all
who have participated in this endeavor...as it represents to me the good wishes of many new friends."
you would like a photo of the finished quilt, please send a self-addressed stamped envelope to Susan Best,
3620 West Mesquite, Pahrump, NV 89048.
Nevadan receives congressional recognition
The efforts of long-time CFIDS
Crum were recently recognized by the U.S. Congress. In a special ceremony May 15 in Carson City,
Nev., Jerry was presented with a framed copy of a statement Sen. Richard Bryan read into the Congressional
Record from the floor of the U.S. Senate on May 11. The Senator personally honored Jerry for his exemplary
voluntary service to the disabled community within Northern Nevada and across the United States.
"Jerry has been a catalyst in bringing advocates together to achieve victories for the disabled,"
Sen. Bryan stated. "I thank him for his service to Nevada and to all who suffer from chronic, disabling
conditions such as CFIDS. He has made Nevada proud."