Insider Looking Out: How People With Chronic Fatigue Syndrome View the Death of XMRV

The findings reported last week in Science that a mouse retrovirus dubbed XMRV poses no threat to the blood supply provided great relief to public health officials. New evidence suggests that researchers who claimed XMRV and its relatives infected more than two-thirds of people with chronic fatigue syndrome (CFS) used unreliable assays and also had a contaminant mar prominent results published by Science in 2009. But people with the baffling disease have had a decidedly more mixed reaction to the "good" news.

Comments on CFS-related blogs include outright dismissal ("don't fall for the sweeping conclusions"), attacks on Science for running the report and an accompanying news article ("total crap" and the "National Science Enquirer"), and continued high praise for Judy Mikovits, the main scientist behind the theory ("In Judy We Trust"). Several stressed that Mikovits, research director of the Whittemore Peterson Institute for Neuro-Immune Disease (WPI) in Reno, Nevada, long has argued that XMRV relatives are linked to the disease—not just a single isolate of XMRV—and that the new findings only sharpen the hunt for the real culprits. One blog poster, a clinician who tested positive for XMRV and began taking antiretroviral drugs, praised Mikovits for a debate she had at a CFS meeting last week in Ottawa, Canada, at which leading researchers discussed the new findings. "The intrepid Dr. Mikovits went up against Darth Vader today in Ottawa," she wrote (Darth Vader being retrovirologist John Coffin of Tufts University in Boston, Massachusetts). "In the face of incredible adversity, she took the heat. For us. … May the force be with her. Brava!"

Several CFS community advocates who attended the Ottawa meeting said their doubts about the XMRV hypothesis had grown over the past year, as many labs failed to confirm the initial reports. Still, they urged researchers to understand why some vocal patients have difficulty abandoning the theory. "Take the most medically underserved community in the United States, throw in a piece of scientific dynamite like XMRV, and you're going to get an explosive and not always pretty result," says Cort Johnson, who runs a popular blog called Phoenix Rising. "How many 1-million person plus, highly disabling disorders get a paltry $6 million dollars a year in research funding? There is immense amount of anger and frustration directed at the federal research establishment because of that."

Robert Miller, a CFS community advocate from Reno, said the 2009 Science report that linked XMRV to the disease gave him tremendous relief. "I fell down on the floor and cried for 2 hours," says Miller. "The way it was presented was: 'We found it, it's the causative agent, and we're going to figure out how to fight it and cure it.'" He subsequently tested positive for the virus at WPI. But Miller represents many XMRV-positive patients who concluded several months ago that their supposed infection likely was not meaningful and that this putative promising lead was heading nowhere. "In my mind, XMRV has been dead for a while," says Miller.

Marly Silverman, who founded a CFS patient alliance called Pandora that's based in Coral Gables, Florida, says she, too, initially was "ecstatic" about XMRV being linked to the disease and saw it as a "gift to the community and patients." The new data she says saddens her. "It's a tough blow to the community, whether you believe XMRV is the thing or not," she says. "A lot of people in our community really thought this was it."

Silverman, like many other advocates, hopes that the silver lining in the XMRV saga is that it draws more researchers to the field. "I do believe there are viruses involved with the disease," says Silverman. "I don't have the real answer, but I just hope science continues to look and figure it out."

Many people with CFS also are looking forward to one more study now underway that is looking for XMRV and related viruses in 150 patients with the disease. Results from that study, led by Ian Lipkin of Columbia University, are expected early next year.