Wall Street Journal health industry blogger reports papers on XMRV being held back from publication

From The Wall Street Journal, health industry blogs, 30 June 2010 (story by Amy Dockser Marcus)

‘Chronic-Fatigue Link to Virus Disputed’

Two groups of researchers studying a potential link between chronic-fatigue syndrome and a virus called XMRV have reached contradictory conclusions, according to people familiar with the findings.

One group found a link, and the other didn’t.

Their reports were held from publication after being accepted by two science journals—a rare move that has caused a stir among scientists in the field.

A paper published in October in the journal Science first identified XMRV in people with chronic-fatigue syndrome. Studies published later by other groups produced conflicting results on whether there was a link, leading to intense scientific debate over the Science report’s meaning.

The Centers for Disease Control and Prevention estimates that between one million and four million people in the U.S. have chronic-fatigue syndrome, which is characterized by debilitating fatigue and chronic pain. Doctors tend to treat the symptoms, but there are no established, specific treatments.

Many patients, desperate for answers as to the cause of the condition, pinned a great deal of hope on the original findings.

Scientists at the Food and Drug Administration and the National Institutes of Health, including NIH infectious-disease specialist Harvey Alter, recently finished research that came to a conclusion similar to that of the Science paper—that XMRV, or xenotropic murine leukemia virus-related virus, is found in the blood of chronic-fatigue syndrome patients.

The paper was accepted for publication in the journal Proceedings of the National Academy of Sciences of the United States of America but is on hold, according to Ashley Truxon, media coordinator for the journal. She had no further comment.

Separately, scientists at the CDC, led by microbiologist William Switzer, concluded in a paper in another journal, Retrovirology, that they couldn’t find XMRV in the blood of people with chronic-fatigue syndrome, according to people familiar with the situation.

Kuan-Teh Jeang, editor-in-chief of Retrovirology, said the Switzer paper went through peer review and was accepted for publication when he got a call from the authors earlier this month. They asked that the Retrovirology paper be held.

“My understanding was HHS [Department of Health and Human Services] wanted to get it straightened out. Both reports are from different branches of the government,” Dr. Jeang said.

In an email between scientists familiar with the situation, viewed by the Wall Street Journal, a researcher said the two teams were asked to put their papers on hold because senior public-health officials wanted to see consensus—or at least an explanation of how and why the papers reached different conclusions, said the people familiar with the situation.

A spokesman for Department of Health and Human Services said the research was being reviewed. “All of these activities need to be completed in order to ensure HHS’s commitment to the accuracy and relevancy of the scientific information it reports.”

Dr. Switzer and representatives of the FDA, CDC and NIH said they couldn’t comment until the papers were published. Dr. Alter couldn’t be reached for comment.

Publication of results is considered a critical part of the scientific process, and researchers familiar with the situation said they were puzzled by the move. It is unusual for a paper to be held after it has already gone through the formal peer-review process and been accepted for publication, say scientists who publish frequently.

“It’s fair to say it’s not a usual kind of thing,” said John M. Coffin, a special adviser to the National Cancer Institute and a professor at Tufts University in Boston who wrote an editorial alongside the Science report in October. Dr. Coffin said he couldn’t comment specifically on the XMRV papers, but that scientists often come up with conflicting data, especially when a virus is new and not well understood as is the case of XMRV.

Fred Friedberg, who has chronic-fatigue syndrome and is president of the International Association for Chronic Fatigue Syndrome, said that because the science on XMRV and the illness wasn’t yet clear, it is crucial that data on XMRV be published.

Write to Amy Dockser Marcus at amy.marcus@wsj.com

  • Science magazine’s, ScienceInsider, columnist on the same subject, 30 June 2010.