Report deals blow to fatigue sufferers
New study sees no link to virus
Two years ago, patients with chronic fatigue syndrome felt vindicated by a study in a leading scientific journal that linked their ailment to a virus. At long last, there was strong evidence their symptoms were not imagined.
But yesterday, the same journal published findings that cast serious doubt on those conclusions, leaving sufferers — some of whom use potent drugs to fend off the virus thought to cause the disease — surprised, disappointed, and angry.
“Most of us feel this is horribly premature and a big mistake,’’ said Rivka Solomon, 48, who has had the condition for two decades and lobbies for funding for research.
The 2009 study in the journal Science showed that 67 percent of chronic fatigue patients carried a retrovirus called XMRV, compared with less than 4 percent of healthy controls, strong evidence the virus might cause the illness. But that conclusion was shot down yesterday by Bruce Alberts, editor in chief of the journal.
“The validity of the study is now seriously in question,’’ he wrote in a statement posted online with the original paper. He pointed out that at least 10 studies conducted by other researchers and published elsewhere had failed to detect the virus in other populations of chronic fatigue patients.
In addition, new research published by Science yesterday found no evidence of the retrovirus in chronic fatigue patients who were previously identified as being infected. A second paper determined the probable explanation for the original faulty research: The patients’ blood samples were probably contaminated with mouse cells containing a virus nearly identical to XMRV.
“I think the door is nearly closed on this issue,’’ said John Coffin, a retrovirologist at Tufts University School of Medicine who coauthored the second paper. “But there are still some ongoing studies to make absolutely sure that XMRV isn’t involved with chronic fatigue. We need to do a full set of due diligence on this.’’
Solomon said she was told her blood contained XMRV when she participated in a research trial last year, not related to the 2009 study. Although she didn’t opt to go on antiretroviral drugs — used to treat HIV and known to cause hair loss, nausea, and other harsh side effects — she said she does have a handful of friends with chronic fatigue who’ve tried them. “Some are doing really well, and some of them are not,’’ she said.
While it’s not known how the blood samples in the original study were contaminated, they were tested for the virus in the same labs where prostate cancer cells were also being studied for the presence of XMRV. “These cancer cells, passed around by many labs, were infected with virus,’’ said Coffin. “And it would have been very easy for the tiniest droplets containing billions of viruses to spread.’’
Researchers now no longer believe that XMRV has any connection to prostate cancer, either.
The number of chronic fatigue patients is not known, but some medical groups estimate there are about half a million in the United States. The new findings dashed their hopes that a specific cause had been found for a chronic condition that leaves many so exhausted they are unable to work, take a shower, or get out of bed in the morning.
“With XMRV, we could have a test, a treatment,’’ said Keith Baker, a 41-year-old father of two from Mashpee who, once a Junior Olympian, had to end his track career when he developed chronic fatigue in high school. He said he was never tested for the virus because his insurance wouldn’t cover it. “No one could say you’re crazy anymore. As scary as a virus is, in a way it gives you some hope.’’
Those are the sorts of sentiments clinical psychologist Ellen Slawsby said she frequently heard from her chronic fatigue patients at Massachusetts General Hospital’s Benson-Henry Institute for Mind Body Medicine. “What I’ll tell them now is that while it would be nice to know the cause, you can still be in control as best you can.’’
But Baker and other patients aren’t quite ready to give up on the XMRV link to chronic fatigue.
“I’m hoping new studies now being conducted will give us clear answers,’’ Baker said. “It’s been such a yo-yo ride.’’
Deborah Kotz can be reached at email@example.com.