Amy Dockser Marcus on the State of Knowledge Workshop debate… so far

April 8, 2011

From the Wall Street Journal health blog, 8 April 2011 (story by Amy Dockser Marcus)

At NIH Chronic Fatigue Syndrome Conference, XMRV Debate Heats Up

Scientific conferences can sometimes be boring events, filled with talks that run over the allotted time, text-dense slides and debate that is so civil it is often hard to tell there is disagreement. But that’s not the case when the topic of the virus XMRV is on the table.

At the NIH’s two-day state of the knowledge workshop on chronic fatigue syndrome, which started yesterday, researchers, scientists, government officials, and patients saw two scientists square off in heated battle over whether XMRV plays a role in CFS.

On one side was Judy Mikovits of the Whittemore Peterson Institute, which led the scientific team that reported a link between the retrovirus XMRV and CFS in a 2009 paper published in the journal Science. She presented both published and unpublished data on how patients make antibodies to XMRV and ways the retrovirus leaves immune dysfunction “footprints in the blood.” She suggested it’s time to translate some of the findings into ways to help patients.

On the other side was John Coffin of Tufts University, presenting unpublished work done in his lab and at NCI suggesting that XMRV was generated during lab experiments growing human cancer tissue in mice and then got into patient samples through contamination.

Emotions about XMRV have run so high for the past 18 months that after Coffin finished his talk, he asked for extra time to make a personal statement. He spoke mainly to patients, some of whom have called into question the motives of the scientists studying XMRV. Coffin said that scientists went into the studies eager to help and weren’t directed by their employers on whether or not to find XMRV. And they don’t have a commercial interest in the outcome. “The statements are not only inaccurate, they are painful to read,” he said.

Still, when asked during the heated post-presentation discussion session for his thoughts on the next scientific steps to be taken, Coffin declared that while he was still willing to consider an infectious cause for CFS, “I see the next step leaving the virus known as XMRV behind.”

The referee in the fracas was Harvey Alter, part of a different group of scientists who found a family of retroviruses (to which XMRV also belongs) in patients with CFS. Alter said that he found Coffin’s data about the origins of XMRV “very convincing,” but questions the “next step” in Coffin’s suggestion, that the XMRV findings in patients are the result of contamination.

Alter pointed out that in the work he is involved with, the scientists constantly worry about the possibility of contamination, but have used multiple detection tests — including ones developed by Coffin’s group — and so far haven’t found any signs contamination has occurred.

Government studies are underway in an effort to resolve the dispute. NCI launched a small study on 30 patients who previously tested positive for XMRV and are now providing more blood samples and undergoing extensive work-ups. A federally led scientific blood working group studying the potential impact on the blood supply is testing for XMRV in CFS patients and in healthy controls.

But Alter told the audience that he is waiting for the results of a major NIH-sponsored study, led by virus hunter Ian Lipkin, that will take blood from a large number of patients and healthy controls at multiple centers around the country and test for XMRV.

Stay tuned, Alter said, for this “critical piece coming down the pike.”

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