From the Desk of Kimberly McCleary - Chronic Fatigue Syndrome

With the huge emphasis we’ve put on the public awareness campaign in recent months, it’s easy to lose sight of the many other ways the Association serves and supports the CFIDS community. Each year we publish a comprehensive annual report, providing a recap of not only financial results, but also highlights from our programs. You can request a copy of our most recent annual report by sending a message to development@cfids.org. Until we publish our 2006 report, I wanted to share our Top 10 milestones from the past year, a reminder of the breadth and scope of the activities of the only organization working on so many fronts to conquer CFIDS.

The first Chronicle of 2006 was a blockbuster 64-page edition, recapping the Science and Research of CFS. Its distribution was broadened beyond our membership list to spread the news to health care professionals, researchers, lawmakers, public health officials, media professionals and other influential people around the country. Copies are still available through http://www.cfids.org/special/default.asp.
Nearly 400 people attended Association sponsored Education and Empowerment seminars, part of our kNOw MORE CFS series of events. In May, CFS experts Dr. David Bell and Patricia Fennell delivered a program in Akron, Ohio and in October, Drs. Charles Lapp and Leonard Jason held a standing-room-only crowd’s attention in Sacramento, California.

Our exhibit, Help the person behind the symptoms, aimed at primary care providers and sponsored by the Centers for Disease Control and Prevention (CDC) traveled to nine national conferences, including those organized by the American College of Physicians, American Association of Family Physicians, Pri-Med (East, West, South and Midwest), the American Association of Physician Assistants, the American Association of Nurse Practitioners, and the American Occupational Therapy Association.

We reached more than 1,300 health care professionals with credible, up-to-date information about CFS through self-study courses approved by the CDC for continuing education credit.

Our May 9 Lobby Day, the 14th annual event, attracted 80 participants from across the U.S. and the group conducted 81 meetings with legislators and their staff members. At the same time, more than 4,000 messages were sent to key individuals by people who participated from their homes or offices in our Virtual Lobby Day.

We supported and participated in the three meetings of the federal CFS Advisory Committee, held April 24, July 17 and November 20-21. Our work on Capitol Hill and with the Department of Health and Human Services (DHHS) contributed to the renewal of the committee’s charter and redoubled efforts from DHHS staff to make the committee more effective.

Three years of work with the National Institutes of Health (NIH) to stimulate CFS research through a special CFS Request for Applications, culminated in the October 30 announcement from NIH’s Office of Research on Women’s Health of 7 new CFS research grants.

Direct funding of four pilot studies brought the total of Association-supported CFS research to more than $4.7 million, the largest source of CFS research funds aside from the federal government.

We provided financial support to two research conferences with important CFS components, the HHV-6 Foundation’s International HHV-6 and 7 Conference in Barcelona (April) and Duke University’s Critical Assessment of Microarray Data Analysis conference where multidisciplinary teams presented their analyses of a complex CFS data set compiled by CDC researchers.

Last, but not least, the launch of the first-ever national public awareness campaign that has so far yielded more than 165 affirming articles about CFS in publications reaching diverse audiences, impactful public service announcements being played on TV and radio markets nationwide, compelling ads about CFS in national magazines, the striking “Faces of CFS” exhibit attracting media and public attention in high-traffic venues, and enhanced credibility and visibility for CFS among health care professionals, lawmakers, researchers and business leaders.

I hope you’ll be inspired by these signs of progress. Being on the front lines for 16 years myself, I know it’s not nearly enough, but this has been a remarkable year and positions us for even greater success in 2007. I invite you to support this work and help sustain this momentum the greater the force propelling us, the faster we’ll travel together.

With appreciation,

K. Kimberly McCleary
President & CEO
The CFIDS Association of America

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