From The Desk of Kim McCleary
Endurance. Persistence. Perserverance. Tenacity.
In 1987 the CFIDS Association of America was formed with a
mission to conquer chronic fatigue and immune dysfunction syndrome. In its own
small way, this new organization was setting out to change the world. At that
time activities were limited to publishing a newsletter about CFIDS for people
who had it and funding research to find the cause and cure. Today, our programs
are more diverse and even more ambitious. We educate broadly. We advocate
widely. And we work to expand research, a part of which remains on directly
funding promising studies.
Although we are still working to achieve
our mission, we have changed the world. In 1987 very few people had even heard
about CFIDS (or chronic fatigue syndrome, chronic Epstein-Barr syndrome or any
of the other names it has been known by). Today, according to a national poll
conducted on behalf of the Association in January 2005, 72 percent of Americans
consider CFIDS to be a “legitimate physical illness.” In 1987 there was just one
man, Theodore Van Zelst, testifying before Congress about CFIDS. This year will
mark our 13th year of hosting a
, lobby day, with a total of 250
advocates having lobbied our political leaders about this illness. In 1987 the
government paid little attention to CFIDS. Today there is a federal advisory
committee for CFIDS issues and a policy ruling that guides the Social Security
Administration’s process for determining disability benefits
for people with CFIDS. In 1987 research funding for CFIDS was minimal, likely
less than a couple of million dollars. While research funding today is still
vastly insufficient given the magnitude of this illness, there is a much more
robust international research effort exploring a wide variety of hypotheses
So, how do we make the next big leap in public understanding,
responsive public policy or biomarker discovery? Some say, “Just get CFIDS on
the cover of TIME magazine.” “Just get Oprah to do a show about it.” “Just find
a celebrity spokesperson.”
It’s not that simple.
In November 1991 CFIDS was on the cover of Newsweek. In June
of 1998 Wilhelmina Jenkins and her daughter, Kamilah Neal, appeared on Oprah’s
show to talk about their battles with CFIDS. During the summer of 2003, Laura
Hillenbrand did hundreds of media interviews about her book, Seabiscuit, and the
film it inspired, and about how CFIDS derailed her life. Before Hillenbrand,
PWCs Michelle Akers (Olympic soccer player), Keith Jarrett (jazz pianist
extraordinaire) and Blake Edwards (acclaimed filmmaker) shared their stories
with the public.
All these things made a difference, but breaking through has
proven to be more process than event. It’s the result of many things—and
people—working well together to push things past the “tipping point.” That’s why
we continue to endure, to persist, to persevere, to be tenacious. It’s why we
need you to do the same. So together we can change the world, a little bit more
every day, until the world changes for CFIDS patients forever.
Treatment. Cure. Prevention. Imagine it. Work for it. We will.