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Let me be clear that I totally agree about the sorry history of the way the
medical profession in particular has dealt with CFS. I've never had it
myself but have a very good friend who was laid up for a year, and no
one--not even his girlfriend--believed it was a real physical condition and
not something psychological. There are still doctors today that take this
attitude.

But there there legitimate reasons for scientists to question the XMRV
connection, and the anger directed at them is badly misplaced. It won't help
CFS victims if researchers chase a false lead.

MB

On Wed, Aug 3, 2011 at 10:21 AM, Mandi Smallhorne <[log in to unmask]>wrote:

> 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.****
>
> ** **
>
> MB****
>
> ** **
>
> Science 17 September 2010:
> Vol. 329 no. 5998 p. 1454
> DOI: 10.1126/science.329.5998.1454****
>
> **·         ***NEWS OF THE WEEK*
>
> *VIROLOGY*****
> No Meeting of Minds on XMRV's Role in Chronic Fatigue, Cancer****
>
> ***1.        ****Jocelyn Kaiser<http://www.sciencemag.org/search?author1=Jocelyn+Kaiser&sortspec=date&submit=Submit>
> ***
>
> *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*<http://www.sciencemag.org/content/329/5998/1454.full?sid=8b56a179-c632-47c4-97a2-ceb256d4f2e0#fn-1> 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<http://www.sciencemag.org/lookup/doi/10.1126/science.326_215a>).
> 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 <http://www.sciencemag.org/lookup/doi/10.1126/science.327.5963.254>
> ).****
>
> This summer, scientists at the U.S. Centers for Disease Control and
> Prevention (CDC) found no *XMRV*in 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<http://www.sciencemag.org/lookup/doi/10.1126/science.329.5995.1000>).
> 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.”****
>
> [image: Figure]<http://www.sciencemag.org/content/329/5998/1454/F1.expansion.html>
> ****
>
> View larger version:****
>
> **·         **In this page<http://www.sciencemag.org/content/329/5998/1454/F1.expansion.html>
> ****
>
>  ****
>
> **·         **In a new window<http://www.sciencemag.org/content/329/5998/1454/F1.expansion.html>
> ****
>
> *In disarray.* ****
>
> Discussions over *XMRV* (*above in prostate cancer cells*) remain in
> “chaos,” says John Coffin.****
>
> CREDITS: COURTESY OF TUFTS UNIVERSITY; (INSET) R. SCHLABERG *ET AL., PNAS*
> *106*, 38 (22 SEPTEMBER 2009)****
>
> 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 *XMRV*actually
> 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.”****
>
> **·         **↵<http://www.sciencemag.org/content/329/5998/1454.full?sid=8b56a179-c632-47c4-97a2-ceb256d4f2e0#xref-fn-1-1>
> * 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?
> Mandi
>
> 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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-- 
******************************************
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