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No Link Between Mouse Virus and CFS
Hillary Johnson is the author of “Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.”
Xenotropic murine leukemia virus-related virus (XMRV) is a human virus, not a mouse virus as you state. Indeed, XMRV is human gammaretrovirus, the first known human gammaretrovirus, and was discovered in 1996. One of the most important contributions of the Science paper of October 2009 was that its authors established beyond any doubt that XMRV was an infection of human beings, not mice.
The three European studies just published largely have not dashed hopes of people who suffer from "cfs" that XMRV is strongly associated with their disease, which was the only claim the Science authors made about the virus and its relation to "cfs." The response to these studies by the lay press around the world have instead dashed hopes that "cfs" finally might be investigated in a straightforward, scientific manner without the prejudice or medical politics that have clouded the discovery process over the last twenty-five years.
This is not a tennis match; it is not a ping pong tournament.
Not all scientific inquries are equal, nor all all scientists. Two of the European studies were commissioned by psychiatrists who have been outspoken in their respective countries that "cfs" is a false belief system of "illness attribution" that can be alleviated or even cured with talk therapy. These psychiatrists provided blood samples from people who, going by the selection criteria described in their papers, are unlikely to actually have "cfs." The patients were not selected by the same criteria as patients in the Science paper.
Patient selection criteria in the third study is also suspect. Equally important, none of the three papers followed the research methodologies used by the Science authors, even though these methodologies were well-described in Science. Nor did the authors of these papers seek patient control samples and reagents from Science authors by which they might have validated their findings.
Other scientists, and patients, are wondering why.
The Science authors demonstrated scientific rigor, conducting their experiments over a three year period; their work was subjected to an intense, six month peer review process. By contrast, the European studies were rushed into print; at least one of them had no peer review whatsover and in fact, the authors paid to have it published.
There will probably be more such studies, but there are also collaborative efforts in the works that are well-designed, well-controlled, and may well have a different outcome. The most one can say about the three European studies at this point is that they demonstrate the immense reluctance that some governments and institutions have displayed to the notion that "cfs" is an infectious disease, or even a disease. These studies have not disproved the association between XMRV and "cfs" that was established by the Science authors; generally, they have suggested that the psychiatrists who commissioned them may not know what "cfs" is, cannot select for "cfs," and that the bench scientists who produced the findings may be ill-equipped to identify XMRV in patients or healthy controls.
Estimates are that between 17 and 24 million people around the world are now sick with a disease that twenty-five years ago was relatively isolated and rare. Media coverage of this phenomenon has tended to be inadequate, at best. The very least the lay media can do at this point is refrain from covering studies that purport to "replicate" the discoveries in the Science paper as if they were covering a sports event.
Posted by: Hillary Johnson | February 27, 2010 at 08:13 AM