XMRV: The Evolving Story

XMRV continues to dominate the headlines and dialogue about CFS, with two new studies capturing attention from media, the scientific community, public health officials and CFS advocates.

On June 22, news of a study conducted by researchers at the National Institutes of Health (NIH) and Food and Drug Administration (FDA) pending publication was leaked by a Netherlands news agency based on information presented by one of the authors, Dr. Harvey Alter of the NIH, at a blood safety meeting held in Croatia in May. It’s evident that Dr. Alter’s slides and remarks were not intended (or cleared) for wider distribution. Although conflicting reports about the status of the study’s manuscript have appeared in national media, Dr. Alter made this statement on June 30, 2010, via the NIH Office of Communications and Public Liaison: “Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy.”

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According to John Burklow, director of the NIH Office of Communication and Public Liaison, these additional experiments were a condition of acceptance by the journal, Proceedings of the National Academies of Science USA (PNAS), and may take weeks to complete and review. Mr. Burklow is confident that the results will be published, and stated that all the collaborators are working expeditiously, but carefully, to ensure the accuracy of their results and the manuscript. The Solve ME/CFS Initiative has confirmed that additional reviewers for the paper were recruited as recently as two weeks ago.

The “frenzy” over news of the NIH/FDA was intensified by June 30, 2010 reports from the Wall Street Journal and Science magazine that a forthcoming negative study from the Centers for Disease Control & Prevention (CDC) was contributing to delays in publication of the NIH/FDA study, and that both papers were being held by officials in the Department of Health and Human Services so that the conflicting results could be more closely examined. Many people were surprised on July 1 when CDC’s paper was published in Retrovirology, contradicting quotes about the holding pattern from several (mostly unnamed) individuals with insider information about the studies. A July 1 article in naturenews neatly summarizes the messy situation.

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The CDC’s Retrovirology paper was submitted to the journal on March 26, 2010, and accepted and published on July 1 after undergoing final scientific review by CDC scientists. According to Joe Quimby, senior press officer at CDC, additional assessment was performed after the paper was originally submitted as part of CDC’s commitment to ensuring the accuracy and relevancy of the scientific information it reports. He noted that the published paper is the same as the original submitted manuscript. No changes were made to the CDC paper authored by Dr. William Switzer, et al.

A critique of the Switzer study by Association scientific director Suzanne Vernon, PhD, titled, “Blood from a Stone,” was posted on July 1. It’s a hugely disappointing study; due to the case selection and sample collection methods used, it doesn’t help resolve the many questions about XMRV and its relationship to CFS.

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As we have since the Lombardi study was published in October 2009, the Solve ME/CFS Initiative has actively promoted properly designed studies that can determine the association between XMRV and CFS. We are working with several investigators who have such studies under way. Publication of study data in top-flight peer-reviewed journals is essential to advancing our understanding of the role that XMRV plays in CFS, and we are actively advocating for publication of the study conducted by NIH/FDA as swiftly as possible. The Lombardi paper was reported to be under review for five months at Science, and it’s important to recognize that top journals enforce tight requirements on their authors. The stronger the evidence is when it is published, the closer we will move to having scientific consensus on this critically important issue.

In the four months that passed between publication of XMRV/CFS studies, many people expressed concern that XMRV was being ignored, dismissed or overlooked. The discrepant findings by federal agencies have brought XMRV and CFS to the attention of the nation’s top public health officials and media outlets. As more information about the timetable for publishing the NIH/FDA study (and studies from other institutions that are in the pipeline) becomes available, we will rapidly share that news.

K. Kimberly McCleary served as the Association’s chief staff executive from 1991-2013.

June 2, 2010