Monday, March 21, 2011

Many patients in the CDC's CFS study did NOT have CFS

CDCMindy Kitei wrote:

Ms. Dockser Marcus reported in this newspaper on June 30 that Health and Human Services officials put two XMRV CFS studies on hold, one by the CDC and another by the NIH’s Dr. Harvey Alter and the FDA’s Dr. Shyh-Ching Lo. Ms. Dockser Marcus wrote that “senior public-health officials” wanted the two groups to reach a consensus, a highly unusual move.

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, Dr. Randy Schekman, for my blog, 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—and in that one case, Dr. Schekman pulled it. (

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 later, on July 1. So much for reaching consensus. Drs. Alter and Lo, who did find XMRV-related retroviruses, were asked to conduct more research, and their study was finally published August 23.

As for my comments at the NIH conference, I interviewed the CDC's Mr. Switzer and his boss Dr. Monroe a few months before the conference. There were serious problems in the CDC XMRV study that I asked them about. (

For instance, as the work of Dr. Leonard Jason of DePaul University has shown, many patients in the CDC study didn’t have CFS but had instead idiopathic fatigue and depression. And rather than do a bona fide replication study that reproduces precisely the methods and patient cohort of the Science study—something students learn in 9th grade science—the CDC chose not to. Both Mr. Switzer and Dr. Monroe replied to my questions the way politicians respond to questions that they don’t want to answer. That’s why I spoke up at the NIH conference.

Ms. Dockser Marcus mischaracterized me as a “patient advocate.” As a health and science reporter for more than 20 years and now as a blogger who broke the story on the publication of the Alter/Lo study (, I’ve been trying to get answers, which haven't been forthcoming from the government where CFS is concerned for more than a quarter century.

Mindy Kitei
CFS Central

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