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Wall Street Journal reports NIH and FDA find XMRV in CFS samples and CDC does not

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mya Symons, Jun 29, 2010.

  1. Mya Symons

    Mya Symons Mya Symons

    I'm so pissed right now. Why can't the CDC get their stuff together? Why do they always have to contradict anything that has to do with CFS/ME being a physical (non-psychological) disease? This is the link to this story: http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html. It is entitled Chronic-Fatigue Link to Virus Disputed- One Research Group Finds Virus XMRV in the Blood of Syndrome Sufferers, One Does Not; Papers Held From Publication. by Amy Marcus.
  2. What pisses me off is that they're being held up for publication.
  3. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    i bet the CDC wouldnt have held up the publishication if things were the other way around.. eg if they found the virus and the NIH and FDA didnt. It's all about themselves, they dont want to end up looking stupid.
  4. Too late for that. The original paper already made the CDC looked stupid.
  5. George

    George waitin' fer rabbits

    South Texas
    The CDC paper was done early on. Most of the early papers that where negative for XMRV did two things that are now known to be no, no'.

    1.) They used PCR only
    2.) They used primer pairs for the ENV instead of GAG.

    The nice thing is . . . now we know. (grins)
  6. dean


    The WSJ article states that "senior public-health officials" want an explanation as to why the two papers had different results. There will almost certainly be consensus among scientists on this. The policy implications are enormous. I am sure that is the reason for the hold. Way above the level of CDC.
  7. V99


    This is a cover up, absolutely outrageous, just who do they think they are. This never happen with prostate cancer. Now everyone else can see how bigoted these guys are.
  8. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I hate all this holding time.. its giving time for all the false info on the study to go around more. We all need to make sure that dont overrun the true stuff out there in the public eye.

    Im bothered by Ward Waltmans comment on the wall street journal to this report. He's quoting untrue stuff about the study which the UK NHS Knowledge service has published about it critaszing that the samples came from a CFS outbreak.. so saying it isnt representive of the CFS community. This is untrue http://www.sciencemag.org/cgi/content/full/328/5980/825-d ... all these false things thou being put out there (which interestingly nearly all come from UK!! Wessleys place).. will have many dismiss the findings.

    I did try to post a comment at wall street journal over it.. but it didnt seem to post. Maybe some others here can also post comments pointing out that the info the other said in the comments from UK NHS is incorrect.

    Ward Waltman says there http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html#articleTabs=comments "The association of XMRV with chronic fatigue syndrome (CFS) is interesting and worth pursuing but is as yet far from definitive. Other viruses including Epstein-Barr virus, cytomegalovirus, parvovirus, and enterovirus, have previously been hailed as "the cause" of CFS, only later to be disproven as such. CDC and NIH have been studying CFS since 1984 following an outbreak in Incline Village, NV, but have never found a consistent pattern of transmission.

    The original XMRV-CFS connection was reported in Science Online 10/8/09 by Lombardi VC et.al.
    The UK NHS Knowledge Service published a good analysis of the Lombardi article, pointing out that their samples were drawn from areas where "outbreaks" of CFS had been reported and that these cases may have had a different cause (ie. an infectious cause) than most CFS cases. By contrast, the great majority of CFS cases are isolated, with no known infection source. NHS points out several other limitations to the Lombardi study, all of which were overlooked by the mainstream press. Link to NHS article: http://www.nhs.uk/news/2009/10October/Pages/Does-a-virus-cause-ME.aspx "

    We NEED to make sure the correct information isnt overshadowed by all the incorrect ..which may be purposely being put out there.
    "CDC and NIH have been studying CFS since 1984 following an outbreak in Incline Village, NV" I find that comment laughable but everyone is free to think what they like... what is bad is the bad false stuff over the study.
  9. pollycbr125

    pollycbr125 Senior Member

    :Retro mad::Retro mad::Retro mad:

    this is just taking the piss if the FDA&NIH papers were negative they would have been splashed all over the world by now .

    In an email between scientists familiar with the situation, viewed by the Wall Street Journal, a researcher said the two teams were asked to put their papers on hold because senior public-health officials wanted to see consensusor at least an explanation of how and why the papers reached different conclusions,

    public health officials want to see negative papers more like not consensus as stated . Simple explanation if you dont look for the virus properly or use patients with a dodgy me/cfs diagnosis you aint gonna find XMRV . If you do it by the book like WPI you do . When is this bullshit gonna end . Ive just go up this has put me in a bad mood for the rest of the day grrrrrrr :Retro mad::Retro mad::Retro mad:



    Two groups of researchers studying a potential link between chronic-fatigue syndrome and a virus called XMRV have reached contradictory conclusions, according to people familiar with the findings.

    One group found a link, and the other didn't.

    Their reports were held from publication after being accepted by two science journalsa rare move that has caused a stir among scientists in the field.

    A paper published in October in the journal Science first identified XMRV in people with chronic-fatigue syndrome. Studies published later by other groups produced conflicting results on whether there was a link, leading to intense scientific debate over the Science report's meaning.

    The Centers for Disease Control and Prevention estimates that between one million and four million people in the U.S. have chronic-fatigue syndrome, which is characterized by debilitating fatigue and chronic pain. Doctors tend to treat the symptoms, but there are no established, specific treatments.

    Many patients, desperate for answers as to the cause of the condition, pinned a great deal of hope on the original findings.

    Scientists at the Food and Drug Administration and the National Institutes of Health, including NIH infectious-disease specialist Harvey Alter, recently finished research that came to a conclusion similar to that of the Science paperthat XMRV, or xenotropic murine leukemia virus-related virus, is found in the blood of chronic-fatigue syndrome patients.

    The paper was accepted for publication in the journal Proceedings of the National Academy of Sciences of the United States of America but is on hold, according to Ashley Truxon, media coordinator for the journal. She had no further comment.

    Separately, scientists at the CDC, led by microbiologist William Switzer, concluded in a paper in another journal, Retrovirology, that they couldn't find XMRV in the blood of people with chronic-fatigue syndrome, according to people familiar with the situation.

    Kuan-Teh Jeang, editor-in-chief of Retrovirology, said the Switzer paper went through peer review and was accepted for publication when he got a call from the authors earlier this month. They asked that the Retrovirology paper be held.

    "My understanding was HHS [Department of Health and Human Services] wanted to get it straightened out. Both reports are from different branches of the government," Dr. Jeang said.

    In an email between scientists familiar with the situation, viewed by the Wall Street Journal, a researcher said the two teams were asked to put their papers on hold because senior public-health officials wanted to see consensusor at least an explanation of how and why the papers reached different conclusions, said the people familiar with the situation.

    A spokesman for Department of Health and Human Services said the research was being reviewed. "All of these activities need to be completed in order to ensure HHS's commitment to the accuracy and relevancy of the scientific information it reports.''

    Dr. Switzer and representatives of the FDA, CDC and NIH said they couldn't comment until the papers were published. Dr. Alter couldn't be reached for comment.

    Publication of results is considered a critical part of the scientific process, and researchers familiar with the situation said they were puzzled by the move. It is unusual for a paper to be held after it has already gone through the formal peer-review process and been accepted for publication, say scientists who publish frequently.

    "It's fair to say it's not a usual kind of thing," said John M. Coffin, a special adviser to the National Cancer Institute and a professor at Tufts University in Boston who wrote an editorial alongside the Science report in October. Dr. Coffin said he couldn't comment specifically on the XMRV papers, but that scientists often come up with conflicting data, especially when a virus is new and not well understood as is the case of XMRV.

    Fred Friedberg, who has chronic-fatigue syndrome and is president of the International Association for Chronic Fatigue Syndrome, said that because the science on XMRV and the illness wasn't yet clear, it is crucial that data on XMRV be published.

    Write to Amy Dockser Marcus at amy.marcus@wsj.com
  10. Sing

    Sing Senior Member

    New England

    George, would you please enlarge upon this, explain what these testing differences are to those like me with only Biology 101 for a background? I would really like to understand this better!

    Thank you!
  11. Tammie

    Tammie Senior Member

    Woodridge, IL
    I don't think there is any "may" to it.....given the entire history of CFS, it is almost certain that it IS deliberate

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