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XMRV and CFS – Hope ahead of Evidence

An interesting article in the Seattle Times last week talks of the retrovirus XMRV (xenotropic murine leukemia virus-related virus) and a proposed link to Chronic Fatigue Syndrome (CFS).   Initially published in Science in Oct. 2009 the paper’s lead author, retroviral immunologist Judy Mikovits reported on a possible association between this newly discovered virus and CFS(Chronic Fatigue Syndrome).  This was followed by intense interest by CFS patients, and antiretroviral treatments, approved for use in HIV infection, have been used off label by some CFS patients.  Several researchers since then have been unable to replicate her findings.  Usually when a single study reports an unexpected and unexplained finding, and other competent scientists cannot replicate the findings, the original research ends up being refuted.  The title tells the story of this messy debate.

Seattle Times     Health   Originally published Friday, June 11, 2010 at 7:01 PM

Hope outrunning science on chronic fatigue syndrome

The story of XMRV and chronic fatigue syndrome is unfolding in a uniquely modern way — highlighting the clash between slow, methodical science and a plugged-in world ready to act upon a single piece of information. It also puts the spotlight on a scientist whose unorthodox statements have raised eyebrows among colleagues while finding a receptive audience among patients desperate for answers.

Originally published in the Chicago Tribune

 By Trine Tsouderos     Read the rest of the article

2 Responses to XMRV and CFS – Hope ahead of Evidence
  1. Hope for the Hopeless
    June 25, 2010 | 7:55 AM

    Looks like you’re mistaken since the NIH has a different opinon!

    http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection/

    By Amy Dockser Marcus
    A report that a respected NIH expert supported an association between the XMRV virus and chronic fatigue syndrome is causing a buzz among CFS patient activists, researchers and clinicians.

    According to a press release issued by a Dutch magazine, one of the slides presented at a recent workshop in Zagreb by Harvey Alter, chief of the infectious disease section at the NIH’s clinical center, supports the link between XMRV and CFS reported last year in Science.

    This is significant because studies published later by other groups have produced conflicting results. Alter is a well-known figure in the infectious-disease world; his research helped lead to the discovery of the hepatitis C virus.

    “It’s what we’ve been waiting for,” says Annette Whittemore, head of the Whittemore Peterson Institute in Reno, whose scientists were investigators on the Science paper. Her team went out to celebrate the report, although she says, “I want to see [the data] published.” She tells the Health Blog she is hoping that confirmation of her scientists’ work will help drive more funding to XMRV research.

    A spokeswoman for the NIH said she couldn’t comment on the report because “the data haven’t been published yet,” though she confirmed the presentation slides are authentic. Alter didn’t respond to a request for comment.

    The May 26-27 workshop was organized by the International Plasma Fractionation Association and the Paul Ehrlich Institute and hosted by the Institute of Immunology (IZM). To see Alter’s presentation, click here, then follow subsequent links to the available presentations and to the Alter presentation in session 4.

    A slide titled “Comments on the Agent Du Jour—XMRV,” says the data in the Science paper are “extremely strong and likely true, despite the controversy.” The slide indicates that the association of XMRV with CFS “is very strong, but causality not proved.”

    In addition, Alter’s presentation estimates the incidence of XMRV in the donor blood supply at 3% to 7%– versus the nearly 4% cited in the Science paper.

    And at the bottom of the slide, in a bullet point that launched all the buzz, this statement: “We (FDA & NIH) have independently confirmed the Lombardi group [which published the original Science paper] findings.”

  2. oregano
    June 22, 2010 | 7:53 AM

    POLITICS OUTRUNNING SCIENCE IN CFS/ME RESEARCH

    Unfortunately, this writer didn’t do her homework so her article is full of errors. The worst one may be re: “…other competent scientists cannot replicate the findings…”.

    The Failure To Find studies from Europe cannot, in fairness or accuracy, be compared to the original WPI study (in which the NCI and the Cleveland Clinic collaborated). They were Quick and Dirty, rushed, and paid to get printed. They were political responses, not scientific ones.

    1) They didn’t even try to replicate and even they do not call it a replication attempt. WPI used four methods to isolate XMRV; those “studies” didn’t use ANY of those methods. For an explanation of why they failed, see:

    http://www.sciencemag.org/cgi/content/full/sci;328/5980/825-d

    2) The sponsors and some researchers involved all come from a school of “thought” that decided decades ago, despite biomedical evidence to the contrary, that ME/CFS is a mental disorder…of “illness beliefs” and “hysteria”, an attitude from the Dark Ages and contrary to WHO and the CDC. (Polio was formerly called “hysterical paralysis” until the polio virus was discovered.) Their funding, careers and egos all depend on disproving any biological finding as soon as possible. The Dutch samples were found to contain XMRV by WPI but those researchers concealed that in a breach of scientific ethics.

    3) If anyone looks into who their patients were, they find that the European studies eliminated those with verified physical illness and included those with depression and anxiety… to fit their preconceived ideas.

    4) XMRV has been found in healthy controls all over the world, including Japanese blood donors (1.7%). Germany found 10% in a respiratory tract study. That the Failure to Find studies found ZERO ought to tell a thinking person that they either didn’t know how to find it or they didn’t want to, or a combination of the two. In fact, patients from UK had samples sent to WPIs lab and about 50% tested positive using the earlier, less accurate test available last fall.

    Politics are still outrunning science in this field and politically naive reporters parroting propaganda do not produce good journalism. See Professor Malcolm Hooper’s well documented history of how the UK has tried to disappear.

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