For patients, the stakes are huge. A viral cause would offer a path to better understanding, prevention, and treatment. A paper published in PLoS ONE in April showed that three registered antiretroviral drugs can inhibit XMRV in the test tube, and although many scientists warn that it's premature even to consider them as treatment options, some patients have started testing out different combinations anyway. (One of them is Jamie Deckoff-Jones, a physician from Santa Fe, New Mexico, who is blogging about her experiences and those of her daughter, also a patient.)
Patients have become a loud voice in the scientific debate as welland it's taking its toll on scientists who don't support the XMRV hypothesis. "It's ghastly, " says retrovirologist Myra McClure of Imperial College London, the lead author on one of the three published studies that came up empty-handed. "I've had people writing me, and I quote, that I don't know my arse from my elbow, and that I should be fired." Four months after her first paper on CFS came out, McClure says it was also her last one. "Nothing on God's Earth could persuade me to do more research on CFS, " she says. "I feel bad for the scientists, because it's true, we are a very angry community, " says Wilhelmina Jenkins, a physicist living in Atlanta who has had CFS since 1983.