A syndrome in search of a virus: ME/CFS, disease paradigms, and the social function of pathogens

Abstract

In 1984, a team of American researchers led by Robert Gallo announced that HIV causes AIDS. Seven months later, the US Centers for Disease Control investigated a postviral illness of unknown cause, which would later be known as chronic fatigue syndrome (aka myalgic encephalomyelitis, or ME/CFS). This article argues that ME/CFS’s emergence was entangled with HIV/AIDS. Once the cause of AIDS was widely agreed upon by the 1990s, the virus-to-syndrome model became the predominant paradigm for understanding syndromic diseases of as-yet unknown cause. At the same time, ME/CFS—a multicausal illness—failed to fit this template, and societal disinterest fell in. Scientific uncertainty sustains the status of ME/CFS as proximate to, but not fully accepted as, bona fide “disease.” This has implications for the history of disability and the history of medicine, as ME/CFS sits uneasily between these bodies of knowledge, demonstrating the thorny and socially overdetermined process of medicalization.