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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. taniaaust1

    taniaaust1

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    nods.. bye, bye original studies. We may end up getting a heap of tampered with studies.
     
  2. Marco

    Marco Old blackguard

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    "So, being in possession of a paper which clearly states that you found no evidence of XMRV in patients and healthy controls, plus were unable to detect even known positives, and that evidence was emerging that you needed to use specific methods and look in particular places, would YOU submit the paper for publication?"

    Its only fair to add to this that, according to Mindy Kitei's sources, CDC failed to detect XMRV in samples which were independently tested as positive by another lab. Which of course, doesn't rule out the possibility that the other lab was wrong, unless the samples were deliberately infected.
     
  3. taniaaust1

    taniaaust1

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    bumping the list of those we can contact. Stopping publication of study affects the whole world and not just America. i think the CDC needs to be bombarded with messages from ones all over the world.
     
  4. Adam

    Adam *****

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    Nice post Marco. This line of thinking makes sense to me.

    We knew all along the CDC began their work before the importance of culturing became evident. On the other hand it does make the CDC look sloppy IMO. Judy M gave them the recipe for finding XMRV - so why not use it?
     
  5. taniaaust1

    taniaaust1

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    done i sent the following

    "Im writing in regards to the XMRV scientific studies of the FDA and NHI which have been put on publication hold. I like many others with CFS wonder why?



    This isnt the way science usually works where once accepted for publishing, science enters public dormains and from which then more studies take place. It appears politics of some kind are holding up studies which have world wide implication not just for those in America. The whole world is looking on, wondering what on earth is going on in America.



    Please please for all the ones with CFS about the world, we need those papers published as soon as possible for debate.



    Tanya Se***

    A CFS patient of 13 yrs in Australia"
     
  6. taniaaust1

    taniaaust1

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    lol.. Wessley will have a new group of patients to be treating.
     
  7. pollycbr125

    pollycbr125 Senior Member

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  8. taniaaust1

    taniaaust1

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    Hi Alex, i think it has too much in it which thou we assume is fact.. at this point cant be said to be fact at all eg XMRV can lie dormant for years or decades before causing illness or death.
     
  9. pollycbr125

    pollycbr125 Senior Member

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    NEWS EMBARGO LIFTED ON PNAS ARTICLES SHOULD BE PUBLISHED AT 3PM EASTERN TIME .http://www.pnas.org/site/misc/journalist.shtml

    should be around 8pm uk time

    though that does not mean it will be published today .Also could it relate to other papers did they have an embargo on something else . i got all excited for a minute till someone pointed out it might not be our paper . sorry if ive jumped the gun we will have to wait and see
     
  10. taniaaust1

    taniaaust1

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    CDC paper finally released

    Interesting how the CDC manages to get its negative paper out before the embargo time is up (if it is at 3.00pm Eastern time.... while the postive studies seem to have to wait. **wondering if it is coincidence.. or if someone just wanted to make sure that paper hit first!**
     
  11. cruzgirl

    cruzgirl

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    I just asked a friend of mine who is a big proponent of breast feeding, she organizes clubs about this (Laleche) goes to world-wide conferences etc. I asked her what she new about XMRV and how it affected breast milk. I explained this would concern ME/CFIDS Moms. I had the fastest response back ever. She knows nothing about this, but would do some digging about it. Inside I laughed because I am sure her digging would get no more answers then we are getting, but at least it is another place for buzz and since they deal with medical personal all the time, just another avenue to go through.

    I am hoping we get answers soon, but I feel hopeful that they are just trying to put in place education etc. In the meantime it is important to keep vocal about this.
     
  12. cruzgirl

    cruzgirl

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    Is there a petition that those from around the world can sign? I just went to the petion site and only those from the US can sign.
     
  13. Greggory Blundell

    Greggory Blundell *****

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    What is the CAA doing to speak out on our community's behalf, to raise these articulate and cogent concerns and wave them in front of the media, to take the lead as the association representing us and speak out against what is unfolding? I'm thinking time is not on our side. We need to be heard, collectively, through our "voice", now, in strong and reputable rebuttal.
     
  14. bullybeef

    bullybeef Senior Member

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    I tell you something, if this CDC news hits the headlines over here, there is definitely something fishy going on.
     
  15. shannah

    shannah Senior Member

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    "Is there a petition that those from around the world can sign? I just went to the petion site and only those from the US can sign."

    Cruzgirl,

    It seems to accept signatures from some countries but not others. I see someone from Portugal and Poland have signed. I had great difficulty from Canada and it would only work by entering a state and zip code.
     
  16. Marco

    Marco Old blackguard

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    Hell - what do I know?

    This is beyond farcical. These people are just playing games.
     
  17. Mark

    Mark Acting CEO

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  18. anne

    anne Guest

    Marco, you're being so reality-based.
     
  19. kurt

    kurt Senior Member

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    Hi Sickofcfs, I agree with you, usually the in-house review comes before sending to outside pub, but there still can be a final approval required before final release. Anyway, I just re-read my post and I was not very clear about the sequence, so I corrected that, I was writing too fast perhaps and that was a lot of years ago I was at the govt lab. Anyway, these are simply reviews that have to happen at some time, probably the order can change. Each lab has their own policies. Obviously the point is moot now wrt the CDC study.

    Dr Yes & Hope, I made a mistake in my post, in a literal reading, and have corrected that now. The order Sickofcfs states is usually correct, I was trying to point out that there are many layers of review. The sequence of events can vary and the 'big brother' reviewers at these agencies can step in at any time and stop the presses. That is what I was trying to communicate. What happened was not that unusual, it is the problem finding XMRV that is unusual, particularly in the 'PCR age' where we think we can find anything.

    Nobody that I know about involved in XMRV research is trying to obstruct science on ME. I don't disagree with you that there may be people who take that as their job, particularly in the UK. But in this case, with the XMRV research I do not see this happening. What REALLY happened here is that the CDC ran some very good XMRV tests and found nothing. I don't think they understand why any better than anyone else right now.


    This is the controversy, we can not presume yet what the reality is here, who is really right. The CDC could find positives in their OWN positive controls. So they would disagree that the other positives are really positive and might think the other labs have contamination, etc. This all has to be worked out.
     
  20. jphillips2

    jphillips2

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