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Suspense. Any news on WHEN the NIH/FDA study might come out?

Discussion in 'XMRV Research and Replication Studies' started by FernRhizome, Jul 22, 2010.

  1. FernRhizome

    FernRhizome Senior Member

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    Does anyone have word as to when the NIH/FDA study might actually finally appear? The silence seems so silent right now...given the original leak, and then the info that the paper would come out, it seems funny to have it now all quiet with no information...



    ?
     
  2. Cort

    Cort Phoenix Rising Founder

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    The CFIDS Association a week or so ago said they were told, I believe, it would be in a couple of weeks. Mindy Kitei said her source said the conclusions of the paper were unchanged.
     
  3. Levi

    Levi Senior Member

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    crystal ball

    I don't see how the paper can be allowed to come out without changing the conclusions. It does not agree with the CDC paper, or any of the numerous zero/zero studies dismissing XMRV infection in the general population. I think the smart money here is on the paper being "disappeared" in some fashion or another. No matter what the grapevine indicates.
     
  4. alex3619

    alex3619 Senior Member

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    Hi Levi,

    I am with Cort on this. I think it is highly likely the DHHS wanted this paper to be unassailable, given the ????storm it is likely to incur. This would make it a stronger paper, and benefit all of us in the long run. I do worry that this is just wishfull thinking however - it is how I would like the world to work, and the world frequently disappoints me this way. However, since this has allowed DHHS and other branches of government time to come up with policies, we may find not only is the paper published supporting the WPI XMRV findings, but that official policy will be announced very soon after.

    Bye
    Alex

     
  5. FernRhizome

    FernRhizome Senior Member

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    I know that threads meander and take off in various directions....but this is just to say there are already a number of threads discussing what will be "in" the paper and if it will be changed and speculations about content....

    I started this thread only to ask iif anyone knows anything about exactly WHEN the paper will come out....I know we've been told it will be a few weeks....but just wondered if anyone's heard a tiny bit more about the timing....?
     
  6. Esther12

    Esther12 Senior Member

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    I'm feeling the suspense too FernRhizome.

    I've got a feeling it will be today... but my feelings are a poor predictor of things. I'm feeling hungry for it - starving.

    As you say, it's all gone quiet, and maybe we're just not used to this. It is a strange situation: everyone knows the broad outline of the paper and it's results (or at least knows what the rumors are) but we can read or asses it in the sort of detail that will be useful.

    I'm still instinctively suspicious about XMRV, but if we have two independent and blinded papers showing a strong correlation with CFS you'd think that there would have to be something in it.
     
  7. knackers323

    knackers323 Senior Member

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    today? is there a chance of that happening?
     
  8. Esther12

    Esther12 Senior Member

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    No, no, no. Sorry - just to be clear, I was only reporting the demented burblings of my own mind.

    As I checked the forum the morning I felt a strange sense that today would be the day.

    That in no way indicates today will be the day though!
     
  9. Sean

    Sean Senior Member

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    Just the calm before the storm.
     
  10. V99

    V99 *****

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    I think it will be the end of next week. This is so big, they cannot bury it.

    What they are trying to do is push Mikovits and the WPI out. Starting with the CFS presentation at the XMRV international conference.
     
  11. toddm1960

    toddm1960 Senior Member

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    I do think they will bury an offical release, I think the paper will have to be leaked to get out the original findings. This way the CDC can still stand on no other offical findings of XMRV.
     
  12. V99

    V99 *****

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    I'm being really hopeful, especially considering that Alter is such a big fish. Just wish they would hurry up.
     
  13. SOC

    SOC Senior Member

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    It appears to me that PNAS publishes weekly on Mondays. (check their website, I may be misinterpreting). I doubt the Alter et al paper will be published in Early Edition simply because Early Edition is only available to subscribers, and given the obvious concern of the patient population, they would be ill-advised to publish in a form available to very few of us.

    The paper must have some changes, although not to the conclusion, which require some rewriting, re-editing, and then new galley proofs (and the associated processes). Simply based on the logistics involved, I wouldn't be looking for the paper before Aug 4. I won't be surprised if it's not out until 3 weeks after that, when most US universities are back in session. If it isn't published by mid-Sep, then I'm going to start worrying.

    This is normal pace for scientific publication.
     
  14. biophile

    biophile Places I'd rather be.

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    The CDC supposedly didn't have to change anything before their study was published. The NIH/FDA may not have to change anything either, although I'll guess there will be some minor changes which actually strengthen their paper further and perhaps weaken the CDC's paper. They also have the advantage of publishing after the CDC, so they can add comments about the differing results.
     
  15. V99

    V99 *****

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    I think the CDC chose not to do anything and publish anyway. They were asked to though. Whereas the NIH/FDA study did what they were asked to and are now publishing.
     
  16. jimbob

    jimbob ME/CFS84-XMRV+

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    I hope the majority of you are right and that the glass is half full. I just don't like giving the cdc all this extra time to work on some sort strategy, we know what they're capable of! We've seen the slides from the early leak, I don't see how they could possibly turn that around, but the sooner the paper gets released the better!
     
  17. dannybex

    dannybex Senior Member

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    Sorry, I completely disagree. Someone pointed out on another thread weeks ago that even the original Mikovits paper had to go through the same hoops (they were asked to do 'addtional experiments before Science would publish their paper). It will come out...there will be a celebration...
     
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    If it changed, then there would have been more time than a month between time it was pulled or put into further review and the time it was approved for publication again. If suddenly it changes the whole conclusion, then they would surely be gunshy about publishing it. The timing supports just a few more tests to confirm the conclusion already in the paper. In fact, if something changed, then I would think publishers would maybe not want to publish it at all.

    If that is the case, then we can expect the results to be even stronger with the additional effort in the last month.

    I also don't think CDC can influence Alter. He seems to be a big boy and not subject to intimidation from CDC. Pulling it temporary is insult enough, but understandable. I guess what I am saying is this is not Defreitas. Alter and the other author are too prominent and confident, in a respected government agency on their own, to allow CDC to stop publication of their paper.

    Plus, there have been lots of leaks to news media. The hold back of both papers were leaked. If pressure caused change in FDA results, surely this would also be leaked. But Mindy, who says she has sources, says the results are the same.

    Another point, there is a public health issue here. I would think that if FDA / NIH was getting pressure to quash the study, or if CDC was bullying them to keep quiet, then for the sake of public health, especially someone whose job is to protect safety of blood supply, they would be slipping copies of e-mails to every news media that would accept it.

    Let's just wait and see.

    Remember, this controversy is not unusual; AIDS story is similar.

    Take comfort that many, many scientists and at least one drug company are looking into XMRV completely independent of CDC, FDA and NIH. It takes time, but the truth will come out. We also have WPI, NCI and CC squarely on our side. And the last two have solid reputations. CDC does not hold all the power. In fact, most discoveries in the last twenty years had nothing to do with CDC. I looked, only major discovery they have had in last 20 years was West Nile Virus.

    Tina
     
  19. SOC

    SOC Senior Member

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    Tina has a good point -- let us not forget that the CDC's mission is not primarily scientific research, it is managing public health. Admittedly, I haven't looked all that carefully, but I don't think there are many (if any) top flight scientific researchers there. The big guns are at NCI, NIH etc.
     
  20. George

    George waitin' fer rabbits

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    The Calm Before the Storm

    The really big storm! I don't know what to say to those of you who are scared droolless. (drool is a wonderful thing) Tina lays it out pretty darn nice. The fear that those who have hurt the CFS/ME community in the past could do it again is understandable but the now is so different from the then that I have no problem with hanging out in the glass is overflowing group.

    Just the people involved in this like Dr. Coffin, Dr. Goff, the Dr.'s Ruscetti, Dr. Alter, Dr. Lo and that's just the cream!

    My glass overflowing prediction (drum roll please) August 23rd release of the NIH and FDA papers with a follow up Press Release banning of CFS patients from donating blood, organs or tissue in September. And then my fellow foggy brain, awesome, cool wonderful crew it's going to be all CFS all the time. News channels, talk shows, documentary's, and print. You better have your stories ready cause everybody is going to want to know. (grins)

    That's my prediction and I'm stickin' too it! Woof!
     

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