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An update on the chronic-fatigue-syndrome controversy

Scientists at the U.S.

Scientists at the U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH) may have independently confirmed a study published last October in the journal Science that linked the XMRV retrovirus to chronic fatigue syndrome (CFS), according to Dutch journalists.

If so, this will be welcome news to the estimated 4 million Americans (and others around the world) who have CFS, a little-understood and often debilitating medical condition characterized by joint and muscle pain, sore throat, tender lymph nodes, headaches, insomnia and memory problems, as well as severe and prolonged fatigue.

The report may also explain why the AABB, an international association of blood banks, recommended last Friday that people who have been diagnosed with CFS be discouraged from donating blood until “further definitive data” are available on the risk of transmitting the XMRV retrovirus via blood transfusions.

The news of the confirmations of the Science study comes from a press release issued Tuesday by Ortho, a Dutch magazine for health professionals. According to the press release, two of Ortho’s journalists obtained a copy of a presentation made by Dr. Harvey Alter, an infectious disease specialist at NIH, at a May workshop on blood transfusion in Zagreb, Croatia. In it, Alter apparently states that “[t]he data in the [Science] manuscript are extremely strong and likely true, despite the controversy. … We (FDA and NIH) have independently confirmed the [Science] findings.”

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Ortho says that it contacted Alter after obtaining a copy of his presentation. Alter would not comment on his lecture in Zagreb, but did confirm that a paper was soon to be published.

As noted here in Second Opinion last week, other scientists had been unable to replicate the findings from the Science study, which was lead by Judy Mikovits, director of research at the the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev.

Of course, it’s not clear yet what the FDA and NIH researchers exactly confirmed. The devil, as they always say, is in the details, and we’ll have to wait for the new paper to know what those details are.

Still, as a blogger on the CFS website Phoenix Rising wrote Tuesday: “It’s hard to imagine that such a report coming from such reputable scientists working in such important institutions, would not quickly legitimize the original Science findings. Researchers around the world (and governments and physicians and, of course, patients) have been waiting for a definitive word on XMRV. If this report is from the FDA and the NIH … then this may be the report that everyone’s been waiting for. Because it’s harder to find XMRV than not find it, any report that shows how to actually find it has the potential of negating all the negative studies before it.” 

Stay tuned.