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Winter 2003  

A Fond Farewell
Long-time Association Staffer Says Good-bye
By Vicki Walker

When I first joined the CFIDS Association’s 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 weren’t far off.

A decade later, we know it’s not simple at all. With every new insight into CFIDS, we realize that there won’t 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 understanding.

In the 10 years that I’ve worked for the Association, I’ve 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 doctor’s 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 agency’s misuse of CFIDS research funds? And who knew that he would use restored funds to develop one of the world’s most comprehensive and promising CFIDS research programs?

Although I didn’t foresee these surprising events, I have witnessed the dramatic impact CFIDS has on patients, their family members and friends, clinicians, researchers, employers and the world’s economy. I have seen many ways for us to work toward our shared goal: to conquer CFIDS, because its effects are so pervasive.

But I’ve 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 advocates’ 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.

I’m 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 — and my commitment to conquering this devastating illness — will stay with me always.

Vicki Walker 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 Association’s programs during her tenure. Vicki is pursuing freelance opportunities and looks forward to spending more time with her family.