“I believe that the government has tremendous opportunity and capacity to make a difference in research and treatment for CFS/ME, but to a great extent, that opportunity has not been realized,” she says. “While we need to continue to encourage action from the government, I believe that the CFIDS Association provides important leadership and a research strategy that can move the CFS/ME agenda forward.”As a recently retired federal employee, Christine Williams understands the potential role of the government in supporting efforts to find solutions to the puzzle of CFS/ME.
Williams got sick in August 2008. “I just woke up one morning with a terrible, flu-like illness – fever, chills, sore throat, swollen glands. I said, ‘Oh my gosh, I’m really sick!’ It was the middle of the summer and I just assumed I’d get well but I never felt good again,” she explains.
She went to her own physician, who ran tests that returned normal results. Williams began to suspect she had CFS when, after seven months of research, persistence and determination, she realized she had post-exertional relapse after feeling better and attempting to resume gym work-outs. But she had trouble getting the formal diagnosis. “No one wanted to diagnose me. One doctor said he didn’t like to diagnose people with CFS/ME, another said ‘You’re not tired enough,’” says Williams. “I finally found a clinician with expertise in CFS/ME through a medical journal who said, ‘Of course you have this, you have seven out of the eight CDC symptoms, but you’re on the mild end.”
Williams was only two years away from retirement; she was determined to persevere at her senior leadership position at the Agency for Healthcare Research and Quality (AHRQ) until she was eligible to do so with full benefits. She credits her director (a physician herself with a college friend with CFS) for supporting her efforts to continue to work with accommodations. Williams curtailed her Agency-related travel, frequently worked from home and avoided evening and weekend activities to conserve energy for her job.
Through her research into CFS, she learned about the Chronic Fatigue Syndrome Advisory Committee (CFSAC) and found that group was looking for a representative from AHRQ to serve on it. She volunteered and was appointed by the Agency’s director, serving for more than a year before retiring in the summer of 2011.
When she told Assistant Secretary for Health Howard Koh, who represents Secretary for Health and Human Services Kathleen Sebelius on the CFSAC, that she was retiring, he asked if she would be interested in helping the Committee after retiring.
Meanwhile, Williams’s relationship with the Association has also evolved. She supported the organization through the Combined Federal Campaign while working at AHRQ. And last fall, she and her husband attended a Washington, D.C., event featuring Association president and CEO Kimberly McCleary, who introduced The Catalyst Fund and the research strategy behind it.
“I asked him to make a contribution and he did,” Williams says. “We’re in a position to make this contribution and we’re hoping the Fund will grow and continue to do meaningful research to move the ball forward. My husband, who’s also in health care and health policy and knows research, has certainly been impacted by my illness. He was impressed with the kind of research the Association has done, and, having seen the illness up close and personal, he felt good about making this commitment to the Association.”
Williams is also one of the Association’s newest board members. She appreciates what she calls the organization’s “pragmatic” approach to narrowing the focus to research, viewing it as a way to move the research forward and to educate and link the medical community to CFS.
“One thing I’ve tried to do since becoming ill is educate people. I’ve been in health policy and health services research for 30 years and it’s absolutely mind-boggling to me how many colleagues and friends know nothing about CFS/ME!” says Williams. “I want people to understand what this is and how it affects people. People see me out and about and say, ‘You look great!’ Well, I don’t feel great. By talking about it, I hope to expand the knowledge and support for effective treatments.”