I don’t think it’s a conspiracy accusation – it’s an expression of the rage and frustration felt by CFS patients who long for an answer. They;’ve had one dangled before their eyes and then snatched away. I think it’s possible that the problems have not been well communicated to the lay people in the trenches fighting this disease. Anyone who has had this condition or known someone who has will be very tolerant of their anger – nothing worse than feeling that a very real and utterly debilitating condition is being dismissed constantly as ‘in your head’ etc.


From: Science for the People Discussion List [mailto:[log in to unmask]] On Behalf Of Michael Balter
Sent: 02 August 2011 11:10 AM
To: [log in to unmask]
Subject: Re: XMRV


There is a legitimate scientific controversy over the role that XMRV may or may not be playing. Here is a recent story in Science that lays out a lot of the issues. The snippet that Mandi includes at the bottom of her message suggests that there is some sort of conspiracy to deny the evidence, but that is far from the case.




Science 17 September 2010: 
Vol. 329 no. 5998 p. 1454 
DOI: 10.1126/science.329.5998.1454

·         NEWS OF THE WEEK


No Meeting of Minds on XMRV's Role in Chronic Fatigue, Cancer

1.        Jocelyn Kaiser

BETHESDA, MARYLAND—For the past few years, researchers have been tantalized by reports linking a new retrovirus to some cases of prostate cancer and, more recently—and more controversially—the mysterious illness chronic fatigue syndrome (CFS). With the excitement over discovering a possible new cause for these diseases, however, has come skepticism, as some groups have found scarcely a trace of the novel virus, called XMRV. Many hoped a 1.5-day workshop* here last week would help resolve the controversy. Instead, the field remains mired in “a zone of chaos,” concluded co-organizer and retrovirologist John Coffin of Tufts University in Boston and the National Cancer Institute (NCI) in Frederick, Maryland. “We don't have agreement on almost anything.”

Still, in spirited discussions, sometimes frustrated-sounding researchers had a chance to air their findings and discuss ways to move forward. At the meeting Francis Collins, director of the National Institutes of Health, announced that NIH is funding a new study that could help resolve whether the presence of XMRV varies with geography or whether differences in how labs prepare and test samples explain the varying results.

XMRV, which resembles a mouse retrovirus, was discovered in 2006 in a group of men with a hereditary form of prostate cancer. Some groups have since confirmed the finding, but others, particularly in Europe, have not. Then a year ago, a report in Science linked XMRV to CFS, a disease involving fatigue and muscle pain mostly in middle-age women (Science, 9 October 2009, p. 215). Although patient groups were ecstatic to finally have a potential cause for what some people consider not a true disease, the study, led by Judy Mikovits of the Whittemore Peterson Institute (WPI) in Reno, Nevada, met with doubts as other groups failed to confirm it (Science, 15 January, p. 254).

This summer, scientists at the U.S. Centers for Disease Control and Prevention (CDC) found no XMRVin blood from CFS patients, while a team at the Food and Drug Administration (FDA) and NIH reported finding genes from a group of viruses closely related to XMRV, dubbed MLV-related viruses, in 87% of 37 blood samples from CFS patients and in 7% of healthy people (Science, 27 August, p. 1000). Differences in virus-detection methods or in how patients were diagnosed or recruited could help explain the discrepancies, the two sets of authors suggested.

At last week's workshop, 220 scientists and others ran through many of the published studies, as well as some new unpublished ones. For example, Mikovits has now found XMRV in patients in England with CFS. She defended her group's original findings: “We have independent confirmation from three groups,” she said at the workshop. But some participants raised concerns about possible sources of stray mouse DNA, from knives for slicing tumors to the heparin sometimes used to stabilize blood samples. Tufts immunologist Brigitte Huber reported that her lab initially found almost no XMRV in CFS patient samples, but when they tested more samples from patients and healthy people prepared a different way, many were positive. These samples turned out to contain endogenous mouse retrovirus DNA, probably from a contaminated reagent, said Huber: “It's a false positive in our hands.”


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In disarray. 

Discussions over XMRV (above in prostate cancer cells) remain in “chaos,” says John Coffin.


One underlying issue is that the polymerase chain reaction assay used to detect XMRV—the assay copies and amplifies pieces of DNA—is so sensitive that it can detect extremely small traces of viral sequences, the amount in a milliliter of water from a swimming pool in which a drop of mouse blood has been mixed, Coffin said. This makes it easy to pick up contaminant mouse viral DNA. Even if XMRV is present in some tumors, the reported levels are so low that it's unclear how it could contribute to the development of cancer, says pathologist Angelo De Marzo of Johns Hopkins University in Baltimore, Maryland. “The data [are] very noncompelling,” says De Marzo, whose lab, working with NCI's Alan Rein, failed to find XMRV in nearly 800 prostate tumor samples.

Some meeting participants said the only way to establish that XMRVactually causes CFS and isn't simply a “passenger” virus that doesn't contribute to the illness is to treat CFS patients with antiretroviral drugs. Coffin cautioned that it would be “premature” to do so without an assay to monitor the amount of XMRV in a patient's blood, as is now done with AIDS patients on antiviral therapy. But if such a test is developed, “I would not be averse to doing very small studies under tightly controlled clinical conditions,” he said.

Hoping to figure out what's going on, a federal working group involving labs at FDA, CDC, WPI, and elsewhere has compared results for blood samples to which various amounts of XMRV had been added. (All six labs detected it.) The group has also tested four WPI samples from CFS patients but isn't ready to discuss the results because “we're still confused by them,” says Coffin, who is part of the working group.

More answers could come from the study Collins announced. National Institute of Allergy and Infectious Diseases Director Anthony Fauci has asked Columbia University epidemiologist W. Ian Lipkin to collect blood samples from 100 CFS patients from four parts of the United States and 100 healthy people and send blinded samples to the FDA, CDC, and WPI labs for testing. “We're interested in settling a discrepant observation,” Fauci says.

Chaos may still reign, but Coffin thinks order may emerge over the next year. If nothing else, he says, “people left the meeting talking to each other when they weren't always before. I hope that will continue.”

·         * 1st International Workshop on XMRV, 7–8 September 2010, Bethesda, Maryland.


On Tue, Aug 2, 2011 at 8:28 AM, Mandi Smallhorne <[log in to unmask]> wrote:

Does anyone on Science for the People know anything about Xenotropic murine leukemia virus-related virus (XMRV) and the controversy around the suggestion (see below, a response from a member of a chronic fatigue forum) that XMRV detection may result from contamination of clinical specimens and laboratory reagents with mouse retroviruses or related nucleic acids?

Maybe we should acquire the email and mail addresses of all the "scientists" who claim that their research "proves" that xmrv is a lab contaminate.  We should all write very polite letters asking how a lab contaminate could occur more than 18 times as often in patients than in controls.
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Michael Balter
Contributing Correspondent, Science
Adjunct Professor of Journalism,
New York University

Email:  [log in to unmask]
Web:    michaelbalter.com
NYU:    journalism.nyu.edu/faculty/michael-balter/

“Faced with the choice between changing one’s mind and proving that there is no need to do so, almost everyone gets busy on the proof."

                                                  --John Kenneth Galbraith



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