IS ME/CFS CONTAGIOUS?

If you have ME/CFS and your significant other or child also has ME/CFS, please contact CFS Central: mindykitei.cfscentral@comcast.net

More on Dr. Judy Mikovits's New Role

The Whittemore Peterson Institute announced today that Dr. Judy Mikovits will transition from research director to director of translational research.  Dr. Vincent Lombardi, lead author of the Science paper that found the retrovirus XMRV in patients with ME/CFS, assumes the job of director of research.

"The point of the change is that the basic research grants and papers are not being funded or published because of the baseless contamination rumors," Mikovits wrote to CFS Central in an email.  "Therefore, I cannot mentor young investigators [and] students, who cannot move their careers forward because of these politics. I will be out seeking collaborations with other institutions--academic, private foundations and industry. Whenever we show and discuss all of the details of the data with investigators, they see and know it is not contamination.

"Prior to the reorganization," Mikovits continued, "I spent my days unable to help thousands... who have evidence of infection and cannot get help from their government or other research organizations.... I am totally confident that XMRV and a family of human gamma retroviruses is playing a role in ME/CFS.... [and] our reorganization reflects that confidence and allows me to move forward drug and diagnostic development."

WILLARD

Question of the day:  Are vaccines contaminated with XMRV and related retroviruses?  After all, XMRV has found its way into common lab reagents and contaminated the 22Rv1 prostate-cancer cell line, among others. To quote the Wellcome Trust, a British foundation, “One in fifty human cell lines they examined were infected with XMRV-related viruses.” And to quote British researcher Mark Robinson, XMRV is “ubiquitous” in laboratory specimens.  Shouldn’t researchers then be testing vaccines as another possible vector for XMRV?

Since XMRV is the third infectious human retrovirus, it would be prudent to ensure that the vaccines aren’t contaminated.  In addition to blood transfusions, vaccinations are another potential way to spread the XMRV retrovirus.  Vaccine safety is as important as blood safety.

BRITISH INVASION

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.