CFS and XMRV

I've been avidly following the news about a possible link between Chronic Fatigue Syndrome and xenotropic murine leukemia virus-related virus (XMRV). It's good and bad news -- good that I may have something I can point to as a cause, bad because it's a retrovirus. Do I have it? Will there be any viable treatment? Could I have exposed my partners to it? We don't know exactly how it spreads yet, though sexual transmission is thought to be possible, and tests for it aren't readily available. The thought that I might have exposed people I love to a virus which causes cancer is frightening.

While reading this NYT opinion piece*, however, I learned something about the debut of CFS to the medical consciousness:

The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”

When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.

An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”

This makes so much sense -- and makes me so angry. It shows how preconceptions in the medical field can ruin lots of people's lives over decades (Chronic Lyme is another example). Patients have been dismissed, doctors have been flagged as quacks, research simply hasn't been done because this wasn't a "real disease". We're decades behind where we should be in finding causes and treatments for it.

I'm glad researchers are finally really looking into it, but the body count has been horrendous. I hope the investigation into XMRV yields something useful, and I hope that the search for other causes and factors continues as well. We need answers.


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