1987 – The CEBV Association was founded by Marc Iverson and Alan Goldberg. In the late ‘80s the group changed its name to The CFIDS Association of America at the suggestion of immunologist Seymour Grufferman who suggested the name ‘chronic fatigue immune dysfunction syndrome’ to reflect the immune abnormalities and lessen the emphasis on fatigue.
1988 – The U.S. Centers for Disease Control and Prevention (CDC) chose to name this mysterious illness ‘chronic fatigue syndrome’ and published a case definition (the “Holmes criteria”) to be used for research. Several other more medical-sounding names were considered but dismissed because they lacked definitive proof of a causal agent. As Dorothy Wall observed in her book, Encounters with the Invisible, “It was one of those seemingly innocuous bureaucratic acts with untold consequences.”
1990 – The November issue of Newsweek featured a cover story on CFS, nicknaming it “yuppie flu” based on the erroneous assumption that it mainly affected upper class women. While the article certainly brought CFS to the forefront, it probably did more harm than good. By implying that it was a form of malingering or burnout, the article contributed to the public’s perception of CFS as a psychosomatic condition.
1993 – The CDC put together a panel of 11 federal scientists to hear and consider arguments related to reworking the definition of CFS and changing the name of the illness. Unfortunately, none of the panel members actually treated CFS patients, so the pleas for a name change fell on deaf ears.
1994 – The CDC issued a revised case definition for CFS, known as the Fukuda or research definition. Although they predictably did not change the name, they did acknowledge its inadequacy.
1995 – The first Congressional briefings about CFS were held and, for the first time, the U.S. Department of Health and Human Services (HHS) added patient advocates to its CFS Coordinating Committee (CFSCC).
1996 – Congress asked the Secretary of HHS to consider renaming CFS.
