Information about XMRV

Karen Lee Richards Health Guide
  • Two weeks ago, I told you that the FDA and NIH had confirmed an XMRV retrovirus link to ME/CFS, also known as chronic fatigue syndrome.  That news was leaked by a pair of Dutch journalists and was based on information given in a closed workshop on blood transfusions in Zagareb, Croatia.  The FDA/NIH study had reportedly been accepted for publication in the presitigous journal The Proceedings of the National Academy of Sciences of the United States of America.

    The following week I learned that the CDC also had an XMRV study that had been accepted for publication in the journal Retrovirology, but their results were the exact opposite of the FDA/NIH's study – they found no evidence of XMRV.  The conflicting results apparently concerned the Department of Health and Human Services, who ordered that both studies be put on hold until they could figure out why they were so different. 

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    Pulling the studies was disturbing to me, but what really upset me was the fact that a mere two days later, the DHHS announced that the CDC's negative paper would be published, but the FDA/NIH's positive paper would be pulled until additional experiments could be done.  Something just doesn't smell right here.

    The CFIDS Association published a statement on their Facebook page indicating that, according to the NIH Office of Communications and Public Liason, conducting additional experiments had always been a condition of publication.  I hope that's true, but the CDC's checkered history relating to ME/CFS causes me to have some serious doubts about our government's honesty when it comes to this illness.

    The CDC's History with ME/CFS

    More than a decade ago, it was discovered that $12.9 million, which had been reported to Congress by the CDC as ME/CFS expenditures, was actually spent on other programs. The CDC was required to replace that money over the following few years.  Then in 2008, Kim McCleary, president of the CFIDS Association, testified before the DHHS Chronic Fatigue Syndrome Advisory Committee, reporting a number of instances of continuing poor management and misuse of ME/CFS funding. 

    The CDC has a long history of woefully inadequate funding for ME/CFS.  And far too much of what little funding there was has been spent on psychological studies instead of searching for biological causes and treatments.  With the CDC's history of treating ME/CFS like a redheaded stepchild, I can't help but question this whole situation. 

    Suzanne D. Vernon, PhD, Scientific Director of the CFIDS Association, worked on ME/CFS research during her 10 years as a scientist at the CDC prior to accepting the position at the CFIDS Association.  Dr. Vernon wrote a very interesting critique of this most recent CDC study, entitled “Blood from a Stone.”  In it she concludes, “So the explanation for not finding XMRV in these samples is simple – this was a study designed to not detect XMRV using a hodge-podge sample set.” 

    If you would like to read the full text of the CDC study, you can download a copy here: Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States

  • Are Financial Concerns a Factor?

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    I hate to even think this, but I can't help but wonder whether money could also play a role in DHHS's hesitancy to publish the FDA/NIH study.  If an XMRV link to ME/CFS is proven, the entire nation's blood supply could be compromised.  It would be extremely costly to screen all the blood currently in blood banks.  And all future donors would also have to be screened for XMRV prior to donating blood.  That's an expensive proposition in this time of recession and in light of our exhorbitant federal deficit.    I hope I'm way off base. 

    I'll keep you posted on news about XMRV and will let you know when and if the FDA/NIH study is finally published.  


Published On: July 07, 2010