The National Institutes of Health is funneling even more of its reported spending on CFS research to projects that “could not be documented as such” – fully 35 percent of it as of FY 2004-05, reports Kim McCleary, president and CEO of the CFIDS Association of America. Her statement is based on a detailed update of the CFIDS Association’s September 2004 CFS research-spending analysis, which at that time uncovered an 18 percent discrepancy.1 Studies listed in the updated analysis relate, for example, to fatigue in Lyme disease, Gulf War Syndrome, and cancer survivors.
Ms. McCleary presented the new findings, titled “Updated analysis of NIH-funded research on Chronic Fatigue Syndrome shows continued trend of diminishing support - Fiscal Years 2000-2005,”2 as an invited speaker at the federal CFS Advisory Committee’s latest meeting with the Department of Health and Human Services on July 17, 2006 in Washington, DC.
This means that “of the $35.6 million reported to have been spent on CFS between 2000 and 2005, only 75 percent ($26.7 million) appears to be directly related to CFS,” the CFIDS Association analysis states. “The lack of progress as demonstrated by NIH support since our 2004 funding analysis is alarming and must be vigorously addressed.”
The report further states:
“The new coding instructions for CFS grants issued by NIH allow the inclusion of studies which may have very limited application to CFS, and for which the principal investigator claims no active interest in CFS.
“While studies investigating various biologic mechanisms can lead to advances for many diseases and conditions, it is essential to have an accurate accounting for studies specific to CFS as a measure of progress in the field.
“There is still no diagnostic marker [for CFS] and treatment is limited to symptom relief, largely as a consequence of insufficient research.”
At a minimum, Ms. McCleary commented, “if distantly related studies are to be accepted as CFS research, a process should be identified to ensure that the outcomes of this research are translated to the CFS field.”
“Analysis of NIH-funded research on Chronic Fatigue Syndrome shows trend of diminishing support – Fiscal Years 1999-2003,” CFIDS Association of America, presented to fifth meeting of HHS and federal CFS Advisory Committee, September 27, 2004 (http://www.cfids.org/advocacy/nih-report.pdf).
“Updated analysis of NIH-funded research on Chronic Fatigue Syndrome shows continued trend of diminishing support - Fiscal Years 2000-2005,” CFIDS Association of America, presented to meeting of HHS and federal CFS Advisory Committee, July 17, 2006 (http://www.cfids.org/advocacy/nih-report2.pdf).