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A Fond Farewell
Long-time Association Staffer Says
When I first joined the CFIDS
Associationís staff in 1993, it all seemed so simple. Proof of the viral cause
was near, making it certain that a diagnostic test, effective treatment and
rock-solid credibility werenít far off.
A decade later, we know itís not simple at all. With every new
insight into CFIDS, we realize that there wonít
be any easy answers. The disease is complex and affects nearly every body
system. The CFIDS community is complicated,
too. People we heralded as heroes 10 years ago have faded into distant memory.
Those we rallied against have contributed to improved scientific and social
In the 10 years that Iíve worked for the Association, Iíve
learned over and again that you never know what might happen. For example, no
one would have predicted that a critical research breakthrough would come from a
group of pediatric cardiologists studying unexplained illness. Yet, the finding
that orthostatic intolerance is very common in
CFIDS patients opened new avenues of research,
yielded credibility with the press and created additional treatment options in
the doctorís office.
Who could have guessed that a CDC researcher once considered
Enemy #1 by the CFIDS community would have
risked his career to blow the whistle on the agencyís misuse of
CFIDS research funds? And who knew that he
would use restored funds to develop one of the worldís most comprehensive and
promising CFIDS research programs?
Although I didnít foresee these surprising events, I have
witnessed the dramatic impact CFIDS has on
patients, their family members and friends, clinicians, researchers, employers
and the worldís economy. I have seen many ways for us to work toward our shared
goal: to conquer CFIDS, because its effects are
But Iíve been discouraged when people exhaust precious time
and energy attacking others, rather than working at solutions. With the
increased use of the Internet, the infighting that goes on becomes more public,
raising suspicion and doubt about advocatesí claims that
CFIDS patients are sane and committed to better
health. This behavior impedes progress.
Still, I am inspired by the thousands of volunteers who lead
support groups, attend Lobby Day, write letters to local media, raise funds,
educate doctors and perform acts of courage every day. I admire the researchers
who endure ridicule from their peers, labor under impossible expectations and
stretch poverty-level funding to piece together the puzzle that is
CFIDS. And I revere fellow staff members who
fight incredible odds with tenacity, compassion and integrity.
Iím humbled to have contributed to progress made over the last
decade. I leave my position at The CFIDS
Association knowing that the experiences and the people ó and my commitment to
conquering this devastating illness ó will stay with me always.
resigns her position as Research & Public
Policy Manager at the end of this month. She joined the staff in April 1993 as
Chronicle Editor and worked with nearly every one of the Associationís programs
during her tenure. Vicki is pursuing freelance opportunities and looks forward
to spending more time with her family.