Advocacy Alert: 09/27/2004

The steep decline in NIH funding for CFS research was the topic of a presentation and report delivered to the Department of Health and Human Services CFS Advisory Committee today by Association president and CEO Kim McCleary. Ms. McCleary conducted a detailed analysis of funding information provided by the National Institutes of Health (NIH) budget office for CFS research from FY 1999-2003.

Although the total CFS research funding reported by NIH for the five-year period was $31.6 million, Ms. McCleary presented research indicating that this total vastly overstated NIH support for CFS research, due to the budget office’s inclusion of 12 projects that had no relevance to CFS and 9 additional projects that were for similar, but diagnostically distinct, illnesses. After adjusting for these misclassified research projects, NIH’s support for CFS research dropped to $25.8 million for the past five years and less than $4 million for FY2003, the most recent year for which totals were provided. The FY2003 figure is little more than the amount spent on CFS research by NIH in 1992. Over this same time period, the overall NIH budget increased a whopping 76%.

The CFIDS Association’s report calls for NIH to, “take immediate steps to reverse the shocking decline in CFS research and to build a robust program commensurate with the magnitude of the illness.” Specific recommendations, including the release of a well-funded Request for Applications and creation of clinical and research “Centers for Excellence”, are included in the 45-page report, as is detailed documentation to support the analysis. Ms. McCleary will meet with key Congressional staff tomorrow to share the report and discuss the Association’s recommendations.

Please respond to our Alert! and ask Dr. Elias Zerhouni to take action to reverse this alarming decline in research. Just click on the Capital Building icon at http://www.cfids.org/ and follow the step-by-step instructions from there. Also, use the "Tell A Friend" feature to generate even more support for these requests.

For a copy of the report in its entirety, send an e-mail message to NIHreport@cfids.org. A summary of the findings will be available on the "What's New" section of the Association’s website later this week.