Wednesday, March 16, 2011


Here's my published letter on "Fighting for a Cause," the recent profile on XMRV researcher Dr. Judy Mikovits in the British publication Nature News.

I have to address the odd comment by [British retrovirologist] Greg Towers, who said of Harvey Alter: "He doesn't get variation, he gets a totally different virus." Harvey Alter would beg to differ. I interviewed him about his XMRV study for my blog, CFS Central. 

Alter [the NIH researcher who, along with Shyh-Ching Lo, found XMRV related viruses in CFS patients] said that he does indeed believe that his group and Mikovits’s group are looking at the same retrovirus.  “Viruses tend not to be homogeneous,” Alter explained.  “The fact that we didn’t find XMRV doesn’t bother me because we already knew that retroviruses tend to be variable. They mutate a lot, basically. This is true of HIV and HCV [hepatitis C virus]. It’s not one virus. It’s a family of viruses.” 

Alter is far more than “a hepatitis expert” that [reporter] Callaway describes.  He's a Lasker Award winner--his NIH research led to the discovery of hepatitis C--and he developed methods to screen for hepatitis, essentially eradicating the risk of acquiring hepatitis from donor blood.  Clearly, Harvey Alter is capable of speaking for himself, so it certainly begs the question:  Why didn’t Ewen Callaway ask him?

Earlier in his article, Callaway wrote: “The authors delayed publication of both papers for several weeks to assess discrepancies.” This statement is not correct. The authors didn’t delay publication. In a highly unusual move, as reported in the Wall Street Journal on June 30, 2010, higher-ups at Health and Human Services (HHS) put these two XMRV studies on hold, one by the CDC and another by Alter and the FDA’s Shyh-Ching Lo.

HHS officials wanted the two groups to reach a consensus, the Wall Street Journal reported, or at least determine how they arrived at different conclusions, a highly unusual move. 

Scientists disagree all the time, especially with new findings. That’s one reason why pulling the Alter/Lo paper appears to be more about politics than science, particularly because in an abrupt about-face the CDC, which didn’t find XMRV in CFS patients, published its study a day after the Wall Street Journal article, on July 1. So much for reaching consensus.

Alter and Lo, who did find XMRV-related retroviruses, were asked to conduct more research, and their study was finally published August 23.

What makes this case even more unusual is that the Alter/Lo paper had already been accepted by Proceedings of the National Academy of Sciences when it was pulled. I interviewed the journal's editor-in-chief, Randy Schekman, for CFS Central. He said that putting a paper on hold had occurred only one other time that he knew of in his nearly four-year tenure at the journal.  

Given these highly unusual events, the Chronic Fatigue Syndrome community is concerned that government health officials have been behaving more like politicians than scientists. Indeed, Bill Reeves, the former head of CFS research at the CDC, told the New York Times after the Mikovits paper came out: “We and others are looking at our own specimens and trying to confirm it [XMRV]. If we validate it, great. My expectation is that we will not.” 

As far as the XMRV negative papers are concerned, Nature News missed key facts.  For instance, rather than do a true replication study that reproduces precisely the methods and patient cohort of the Science study--something students learn in 9th grade science--the CDC as well as the Dutch and British researchers chose not to.

In addition, many of the patients these researchers are studying don’t have CFS, but have in fact idiopathic fatigue and depression, as confirmed by the research of Leonard Jason of DePaul University.

Mikovits’s study as well as Alter and Lo’s, however, did look at patients with bona fide CFS.

No one yet knows the role of XMRV in CFS, and no one will ever know until scientists examine the correct cohort and reproduce precisely the methods of the Mikovits study.


  1. Absolutely! I'm so glad you are able to articulate so clearly what's going on here. My foggy and unscientific brain makes it so difficult... Thank you for continuing to research and write about these issues.

  2. Thanks for the clarifications, Mindy. I appreciate you keeping on top of this.

  3. The Band is Still Playing....only a little louder

  4. Thanks for pointing out the politics involved in XMRV research in your article. It helps support that patients are not hysterical imagining some great conspiracy, but rather they are noticing government interference and ideological differnce in science.

  5. Thank you Mindy for commenting on the Nature article.

    The term chronic fatigue was used throughout the article.
    The editor Brendan Maher commented on this choice: ''I can say that the decision to refer to Chronic Fatigue Syndrome/Myalgic Encephalomyeletis as simply chronic fatigue in some, but not all instance, was mine and made solely to try to improve readability and reduce the use of acronyms.''
    Sorry Brendan, not good enough, this is a lame excuse. Since when do we get diseases renamed to improve readability? By removing the appropriate term of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome you have reduced a complex illness with multiple and hard to manage symptoms- a syndrome - into a single symptom situation.

  6. Thank you, Mindy, for your clear explanation. This article contained numerous errors and oddities, and I am glad you are clarifying.

    Patricia Carter

  7. Thank you Mindy for a most excellent smackdown.

  8. thank you for stating the obvious in such a concise, unmistakable style.

  9. Thanks, as ever, for being the sword of truth. The overalll tone of the article that you commented felt manufactured just to make a story. You pointed it out in detail. Thanks, Mindy, excellent letter.

  10. Towers thinks that a computer simulation is better than experimental evidence and reckons that XMRV must be a contaminant because he thinks he might have found evidence in 2 of the potential 475 integration sites that XMRV occupies in the DNA of prostrate cancer paptients
    Surely the opinions of a man like that must be worth something

    he is English by the way. as are all the other idiots who cant follow the scientific method

    I,m surprised they found America they are usually incapable of finding anything!

  11. Bless you, Mindy. You are fighting back for all of us, with the kind of sharp, incisive language and analysis that many of us, ex-professionals, highly-educated, used to be able to do ourselves, before this horrible disease robbed us of our honed intellects, cognitive talents and sharp communication skills. It is so horrible to be trapped in the mental confusion and sapped mental energy of this disease, in many ways much worse than the physical fatigue, not least because we can't defend ourselves like this in words anymore. We need you, Mindy. Thank you from the bottom of my heart for all you do.

  12. A well written letter Mindy, not as biased as usual, and for once I concur with everything you said (which I'm sure you don't care anyway).

    Your last paragraph should be emphasized:

    "No one yet knows the role of XMRV in CFS, and no one will ever know until scientists examine the correct cohort and reproduce precisely the methods of the Mikovits study."

    NO ONE YET KNOWS THE ROLE OF XMRV IN CFS. Including Mikovits, et al. Or if there IS a role.

    And why didn't Harvey Alter do a replication study?

  13. Thanks for your letter and vigilance, Mindy.

  14. Thanks Mindy for continuing to cover this issue!

  15. Is it true the British press is vetted on all health matters including ME/CFS? And does this control extend to what scientists can investigate when it comes to ME/CFS? If so, then all scientists in the rest of the world need to be made aware of it, and not let the British papers skew their research directions inappropriately.

  16. Well done Mindy, thank you for communicating Dr. Alter's true beliefs about XMRV/MLVs!

  17. I'm a little late on this Mindi, but so very appreciative of your efforts to keep the facts straight. Thank you for a well written letter and for your interviews.

    Heidi Bauer



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