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FDA/NIH XMRV paper ON HOLD

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

  1. CBS

    CBS Senior Member

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    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

    http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj (not my find - thanks sproggle)

    It looks like HHS has asked the FDA/NIH to hold their upcoming XMRV paper.

    Withholding two papers in a month. Not the way the science typically works. This MIGHT be OK in the very short term (in the name of finally getting things right as opposed to a big nasty public fight) but I don't think they can't do it for long without being seen as using politics to interfere with science.
  2. George

    George waitin' fer rabbits

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    I stand by my earlier prediction that DHHS is holding the publications of all (there are around a dozen) XMRV research papers until they have testing in place and a better understanding before going public. My feeling is that they are trying to handel things right.
  3. Forbin

    Forbin Forbin

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    Sounds like they are concerned about the public reaction when the country discovers that 3%-7% of the population may be infected with a retrovirus.

    Good.
  4. CBS

    CBS Senior Member

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    Don't know how the HHS plans on dealing with this.

    The CDC may have decided to pull their paper on their own (assuming that 'they' are the CDC ):

    But it appears that the FDA/NIH paper was pulled because of HHS pressure.

    If the HHS concludes that the CDC was right and the FDA/NIH got it wrong, they'll never be believed. Interference like this is dangerous as it could be construed as subverting the scientific process. The patient community has such a poor history with governmental agencies (in terms of good faith efforts or appreciating that some patients are running out of time).

    George, I hope that you're right and I hope the HHS realizes the critical urgency in communicating openly with the patient community. Our lives have already devastated by indifference. It's our government too. If nothing else, they owe us the decency of being forthright and doing it sooner, not later.
  5. Lynn

    Lynn Senior Member

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    This just makes me sad! I hope you are right, George.

    I watched those "professional videos" and it all seems so real to me. I wish they would just publish and move on with the treatments.

    Lynn
  6. Lesley

    Lesley Senior Member

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    Sounds like the person who shared the email with the reporter wanted to be sure these results aren't hidden for long.
  7. julius

    julius Watchoo lookin' at?

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    I don't think either paper is withdrawn. They are just on hold.
  8. John Leslie

    John Leslie

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    Is Switzer even a Ph.D or a trained retrovirologist?
  9. CBS

    CBS Senior Member

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    You're right. I've requested that the thread title be changed ('on hold' is more clearer and more accurate than 'temporarily withdrawn').
  10. CBS

    CBS Senior Member

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    Putting the article "on hold" is keeping it out of the hands of the international research community. Whatever the U.S. government thinks it needs to straighten out behind closed doors, it is doing so at the cost of denying the larger scientific community an opportunity to critique and comment upon the science.

    Has anything like this ever happened before? HIV?
  11. Rrrr

    Rrrr Senior Member

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    please consider posting this in the comments section of the WSJ article!!
  12. Rrrr

    Rrrr Senior Member

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    please consider posting this in the comments section of the WSJ article!!
  13. Rrrr

    Rrrr Senior Member

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    please consider posting this in the comments section of the WSJ article!!
  14. Rrrr

    Rrrr Senior Member

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    this is just a crazy, politically-driven decision on the part of HHS. we need to email them and tell them it is unacceptable. who do we email?
  15. ixchelkali

    ixchelkali Senior Member

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    Damn.

    I agree.

    Earlier today in conversation with my husband I accused myself of paranoia for being afraid something like this was happening. Because I just finished reading "And the Band Played On," where politics trumped science at every turn at the Dept of HHS. Everywhere else, too, come to think of it. And it happened with both Republicans and Democrats.

    This is not the transparency we've been promised in this administration. I think it's time to start writing to our congressmembers and senators. I'm afraid it could be that they figure with a couple of wars, a recession, and a major oil spill going on, that the country doesn't need any more bad news. We can't let this happen behind closed doors.

    Okay, tell me I'm being reactionary, please.
  16. kurt

    kurt Senior Member

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    IS this a political move? I can't imagine that top-tier researchers would let politics over-rule their studies. We care more about CFS politics than they do. Anyway, this is an expected move in a government agency when there is disagreement. No agency, including HHS, wants to display its own scientific disagreement to the public. So they will take the time required to try and explain the disparity. The article just said the HHS wanted to review the situation, and that makes sense, I would do the same in their position.

    Also, consider that these researchers are 'industry insiders' so they probably know the results of other unpublished studies. If they could see from all the pending studies which way this issue was going to go, they might have only pulled ONE of the two studies. Holding BOTH studies tells me they are really perplexed, so now they want to review and make sure both studies represent good science, before releasing them.

    Hopefully they will reach their own internal consensus view quickly, even if it is just that they agree to disagree.
  17. Sean

    Sean Senior Member

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    That is the most likely and most reasonable explanation.

    I would rather they took a bit of extra time to sort out any discrepancies, before making any major announcements.
  18. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > Anyway, this is an expected move in a government agency when there is disagreement.

    Not according to Coffin and the other researchers the WSJ talked to. Coffin's an old man, besides being a National Academy member. This isn't his first or second year (or decade) observing the science scene as a well-placed high-up insider.

    This is outrageous.
  19. CBS

    CBS Senior Member

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    This appears to be government not trusting scientists and the scientific process to arrive at the "right" conclusion on the topic. It must be maddening as a scientist to watch this play out.

    Welcome to every day of our lives!

  20. Rrrr

    Rrrr Senior Member

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    does anyone here live in the boston area? if so, please private message me.

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