How Many People Have CFS?

Questions about the number of people affected by CFS have been raised in response to a discrepancy between the prevalence figure printed in the ads in Ladies’ Home Journal and Better Homes and Gardens and the number the Centers for Disease Control and Prevention (CDC) has been using in its past communications, including its web-based information about CFS available at www.cdc.gov/cfs.

Over the years, estimates of the prevalence of CFS have increased as study design and methods have better reflected the complexity of the illness itself. Research groups working independently at CDC and DePaul University published studies in 2003 and 1999 (respectively) documenting that between 450,000 and 900,000 American adults have CFS.

CDC researchers have just completed a new study of the prevalence of CFS in metropolitan, urban and rural areas of Georgia using improved screening methods and more sensitive and specific diagnostic criteria. This study has yielded a significantly higher estimate of the number of people who have CFS, and it is currently being submitted to a peer-reviewed journal for scientific validation and publication.

The print ads, public service announcements and other materials created for the CFS public awareness campaign utilize this new data, which was originally to be released at a press event initially scheduled to coincide with the June 7 campaign launch. However, recognizing that the new prevalence figures would be of heavy interest to the media , policy makers, public health officials, the scientific community, health care professionals and the CFS community, CDC leaders determined that all parties would be best served by postponing the press event announcing new prevalence data until soon after the study is published in a scientific journal. This will allow the study methods to be described and discussed fully, as well as the implications for the significant increase in the estimate of the number of Americans affected by CFS. Regrettably, when this strategic change was made, the ads in the monthly women’s magazines were already at press with the new prevalence estimate included in the copy.

The Georgia study represents the first in a new generation of epidemiology studies that address shortcomings of earlier studies. We will report those details in the CFIDSLink and the Chronicle when this new study is published. Stay tuned!