While most of us consider this to be obvious, there is not universal acceptance that CFIDS is either prevalent or serious enough to warrant this status. I believe that the recent CDC report estimating the economic impact of CFIDS to be $9.1 billion per year (excluding medical costs) adds sufficient weight to existing evidence of the magnitude of CFIDS to merit formal recognition as a public health priority.

Here are some other facts that support my belief:

• CFIDS affects approximately 800,000 U.S. adults. Studies of adolescents and children have been insufficient to document prevalence in younger populations and there has been no attempt to estimate worldwide prevalence.
• CFIDS disproportionately affects women, African-Americans and Hispanics, and people of less-than-college education and lower socioeconomic status. Preliminary evidence suggests it is a greater problem in rural communities than urban or suburban settings. These populations have less access to appropriate medical services.
• CFIDS is, by definition, a disabling chronic condition. CDC studies indicate that the greatest statistical likelihood for recovery occurs in the first five years of illness. An acute onset and delays in diagnosis and symptom management are associated with poorer long-term outcomes.
• Fewer than 20% of persons with CFIDS have been diagnosed or treated by a health care provider, contributing to increased illness duration and severity.
• The quality of life for individuals with CFIDS has been reported by CDC as significantly lower than those with other chronic illnesses.
• Despite nearly two decades of research, no diagnostic test is available, the pathophysiology of CFIDS is not well understood, and treatment is limited to symptom and lifestyle management.
• Due to the lack of well-funded longitudinal studies, the long-term prognosis for CFIDS patients is uncertain.

At its December 8, 2003 meeting, the CFS Advisory Committee acknowledged that, “The patient community has been injured by disrespect, apathy, and ignorance by the medical community, and this, in part, has been due to the inappropriate name of the illness.” The committee recommended that “the disrespect experienced by patients from both the general public and medical community should be aggressively addressed.”

Since a name change is not imminent, formal designation of CFIDS as a public health priority could be a useful tool to diminish the stigma associated with CFS in the interim. Recognition by the Department of Health and Human Services carries weight with other government entities, the media and funding institutions. We can use it to elevate awareness of the severity of CFIDS and to attract attention to our cause. It’s an asset that we will work to secure for our work and that of other organizations and individuals.

K. Kimberly McCleary
President & CEO