- At a time when many people turn their thoughts to spring cleaning, Association president & CEO Kim McCleary compares the state of her desk to the state of activities happening on the CFS front this spring.
From the Desk of Kim McCleary: When Clutter Means Progress
- Facilitating CFS research is at the core of the CFIDS Association’s public policy program. Its goal is shifting the burden of funding CFS research from those who can least afford it, the patients, to those who can best afford it, the U.S. government.
The Research Advocacy Connection
- Chronic diseases like CFS are tough to study let alone to identify a cause becauseas the name chronic implies and the definition insists uponthe disease occurs over time. The term birth cohort refers to a group of people enrolled in a study from birth and followed for a certain period to evaluate any number of issues across the lifespan.
- In her role as scientific director for the Association, Suzanne Vernon, PhD, has hit the ground running, literallymaking trips to scientific meetings, visiting with researchers and sharing CFS science with public policymakers.
Scientific Director on the Job & on the Road
- Better public health policy, increased funding for research and greater accountability are all important to the CFS community. Thats why the CFIDS Association focuses on advocacy in its mission to conquer CFS. In this election year and with Congress developing its budget and spending bills, heres how the Association is working to keep CFS priorities in the discussion.
Meetings & Congressional Briefing on CFS
- In 1998, a full decade after getting sick, I stood in the living room of my small round house looking out at the oak and maple now nearly stripped of their leaves, hearing the call of cattle from the valley floor mingle with the sound of a southbound freight, and came to a defining realization. Having moved from the city to dwell in a quieter, more remote setting, I was living a life that seemed in keeping with my health situation.
Leave a Reply