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Chasing the Shadow Virus: Chronic Fatigue Syndrome and XMRV

In one of the most bruising science debacles of the decade, researchers hoped to track down the cause of chronic fatigue syndrome — but ended up studying an artifact created in the lab.

By Hillary Johnson
Jul 20, 2013 12:00 AMApr 27, 2020 1:37 AM
Chronic Fatigue Syndrome and XMRV
(Credit: David Calvert/AP Images)

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On the uncharacteristically cool morning of July 22, 2009, 24 scientists gathered at the National Institutes of Health in Bethesda, Maryland. The topic: a troubling new retrovirus called XMRV. A paper in the journal Science was about to implicate the virus as the cause of a devastating disease with a dismissive name: chronic fatigue syndrome, or CFS. Doctors have compared the worst cases of CFS to end-stage AIDS. CFS patients have cancer rates that are significantly elevated and immune systems that are seriously impaired. The disease can confer a kind of early dementia and may shorten its victims’ lives by 20 years.

Scientific explanations for the rise of CFS cases, a phenomenon dating to the mid-1980s, have mostly focused on viruses, but psychiatric theories have abounded, too, driven primarily by the Centers for Disease Control and Prevention, which promoted the idea that CFS was “hysteria” or hypochondria. Many scientists and doctors familiar with the disease had long suspected a retrovirus, an organism rife in nature that invades the immune and central nervous systems, as seen in AIDS. Once a retrovirus has infected an organism, it commandeers that organism’s genetic machinery, turning a once-healthy cell into a retroviral powerhouse that spreads the infection to more cells in an irreversible cascade. 

By 2009, scientists had identified a mere handful of specifically human retroviruses: HIV 1 and 2 (human immunodeficiency virus), the cause of AIDS; the HTLV group (human T-cell lymphotrophic virus), at least one of which — HTLV-1 — was a cause of leukemia, lymphoma and an MS-like neurological disease; and HBRV (human beta retrovirus), tentatively considered the cause of a severe liver disease called primary biliary cirrhosis.

At the center of speculation about the new retrovirus that day in July was an immunologist and AIDS researcher named Judy Ann Mikovits (pronounced My-ko-vitz), a diminutive 51-year-old in a sleek black suit and a crisp white shirt. Mikovits was a 20-year veteran of the National Cancer Institute (NCI) who had coauthored more than forty scientific papers. During her final two years at the agency, she had directed the Lab of Antiviral Drug Mechanisms, where she studied therapies for AIDS as well as one of its associated cancers, Kaposi’s sarcoma.

Mikovits had flown to the NIH meeting from Reno where she had been working in a small lab on the campus of the University of Nevada medical school for the previous three years. She listened as other scientists presented what they knew about XMRV, which was largely that it might be linked with prostate cancer. 

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