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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. V99

    V99 *****

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    I think the last edition of PNAS was the 20th, today would be the new edition.
    http://www.pnas.org/
  2. Levi

    Levi Senior Member

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    Perhaps,

    However, as of yet, there is no government approved commercial test for XMRV; it is all pretty much a WPI/VIPdx thing. And it would appear that the WPI is no longer the go-to source for XMRV information as far as the US government is concerned. It is doubtful that any FDA approved test for XMRV will arrive in the near future, given the politics of the microbe. It is also unlikely that a true picture of what is going on "behind the scenes" is readily available on the internet.

    I remember as a child on a camping trip watching racoons around the campsite fire. They would find a piece of candy, take it to the creek and wash it. The chagrined look on their masked faces when it dissolved in their paws stuck with me. I am getting a sense of that here . . .
  3. julius

    julius Watchoo lookin' at?

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    If we haven't heard anything by now it probably won't be this week.

    *****

    "The Proceedings of the National Academy of Sciences (PNAS) sends out embargoed press releases every Wednesday for a selection of papers that will be published the following week. The embargoes lift the following Monday at 3 p.m. Eastern. That’s a fairly typical embargo setup.

    What’s not as typical is that some of the other papers that will be published in the same week — whose embargo also lifts at 3 p.m. on Monday — are available to reporters the previous Wednesday, but not available online when the embargo lifts. They become available sometime during the week, often as late as Friday. That means that when stories based on those studies come out, you’d search in vain if you wanted to find the original papers."

    http://embargowatch.wordpress.com/2...apers-arent-available-when-the-embargo-lifts/
  4. V99

    V99 *****

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  5. SOC

    SOC Moderator and Senior Member

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    The researchers don't have to be ME/CFS experts as long as they have a good patient cohort. The best research situation for us would be a patient cohort verified by reliable ME/CFS specialists and labwork performed by the very best retrovirology researchers possible. The Alter/Lo research could be exactly that.

    All those 0/0 studies mean almost nothing in the research world. All they've shown so far is that they can't find XMRV in human (not lab) samples. They're not published in top flight journals. They didn't get the rigorous review that the Science and PNAS (Alter, Lo, et al) have had. When the Alter et al paper comes out (and I firmly believe it will), our situation will improve dramatically. Science-published discovery paper followed by PNAS-published validation paper is ... is... my sports analogies fail me.... a knock-out punch is perhaps the closest I can manage. It's big.

    The Alter et al paper is not going to be quashed. Too many important people know about it. Too many people, period, know about it. It may be delayed up to 3 months if the DHHS has to do some scrambling to get all its little duckies in a row, but it won't be quashed. I'm betting we see publication in August.

    Patience is required, difficult as it is. Good research is slow (by modern communication standards) and thorough. We can start pitching a fit if we don't see the Alter et al paper by late September.
  6. SOC

    SOC Moderator and Senior Member

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    Given the obvious patient interest (and the editor knows very well from patient letters), I very much doubt this paper will be in the early edition. Early edition is only available to subscribers, so there would doubtless be an uproar from patients if the paper was published in early edition and patients couldn't get access for another 5-7 days. ;)
  7. V99

    V99 *****

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    Neither would I, but I don't think it will be this weeks edition.
  8. SOC

    SOC Moderator and Senior Member

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    WPI shouldn't be the government's go-to source for XMRV. XMRV is not all about ME/CFS, even if we are. There are researchers who have been studying XMRV longer and in more detail than WPI.

    WPI should be the go-to source for XMRV in ME/CFS patients, in my opinion, but that's a different kettle of fish.

    We want as many top-notch researchers involved in XMRV as possible. The more Ruscettis and Alters the merrier.

    Given the work already in place to find a reliable test (Phase 1 done, Phase 2 in progress I think), I think the likelihood of an approved test in the relatively near future is very high.
  9. muffin

    muffin Senior Member

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    Yup. I too agree with the super smarts of Tina and George. Or rather, I pray that they are right. No, I agree with them...

    BUT, IF those studies appear to have been messed with in any way, and the authors allow that the studies have been group-groped (CDC's hands in it), then we MUST really make a scene of some sort. A bigger scene that what we all have been doing thus far. I may just give up and give in and go stand in front of the CDC with a placard that gives website addresses and the major issue of what they are hiding from the American public. It's getting to that point with me.

    Also, Lynn pointed something good out. Getting this stuff into the newspapers and the TV. I am going to bang on MSNBC and see if they will look into this whole situation. I'm tired of there inane stories (not all, but some of them, like the Liindsy lohan going to jail thing) should be replaced with for real, serious and possibly deadly issues like ours.
    Others - Please email MSNBC along with me. CNN won't bite and I have emailed them over and over. No go. Ditto for the major newspapers. We might also hit NEWSWEEK again since they did do the 1990 article on CFIDS and may want to update it with the new stuff going on in 2010. Please email along with me to Newsweek as well. I'm back to sleeping 16 to 18 hours a day which leaves little time for anything. Plus, as you can all see, I can no longer write well enough to do justice to our cause. Thanks - M
  10. Sean

    Sean Senior Member

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    Wow, you give up easily. This whole XMRV thing is just getting warmed up, and you have already thrown in the towel. Are you serious?!?
  11. V99

    V99 *****

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    What sean said, and just to be clear, we are not giving up. Now way ever.
  12. George

    George waitin' fer rabbits

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    Hehehehe, Jimbob if I'm right George is going to open up his very own psychic hotline.

    Remember NIH paper on the 23rd and then the FDA will announce a ban between Sept 7th to the 17th.

    Matchsticks anyone? (big grins)
  13. V99

    V99 *****

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    I just wish it was earlier than the 23rd.
  14. George

    George waitin' fer rabbits

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    Hey, V you could get your wish, I could be totalyyyyyyyyy wrong!.
  15. ukxmrv

    ukxmrv Senior Member

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    George, this is as good as Paul the Psychic Octopus
  16. shrewsbury

    shrewsbury member

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    Okay -I'll put on my prognosticator's cap, but I'm in a foul mood and seeing the negative indicators.

    The 1st International XMRV Workshop is Sept 7&8 2010. It will "set the stage"

    My guess is that the FDA/NIH paper comes out after the workshop, say late September.

    And then we will get a paper from Stuart Le Grice (here's some info on what he said at the Blood Products Advisory Committee from Medscape) saying that they have a gold-standard xmrv test - late Sept or early Oct.

    And then the FDA will ban donations in late October/November.

    (I need a lighter brand of tea leaf!)
  17. V99

    V99 *****

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    I am going with the paper being out in the next two weeks. That's my bet.

    The CDC would be better off if they used the otopus to determine who was positive, with a yes box and no box vote.
  18. George

    George waitin' fer rabbits

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    ROFLMTO, heeehehehe, and they still couldn't find a positive. I heart Le Grice! Hey Shrewsy, see I think it's the test that the DHHS has been waiting on. They didn't want to let the positive stuff through till they could tell the public that they had a test that was reliable. Cause folks is gonna want that test. So they had to have that first. Now with a test good to go hey, they could release the flood gates tomorrow. But I think they will stretch it out a bit to get the test properly "validated" and make lots of em so they will be available for when it fit hits the shan. (grins)

    I've got a nice Darjeeling I'll send you. (big silly smiles)
  19. Levi

    Levi Senior Member

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    De Freitas redux

    Sean,

    I am not giving up on anything. I am more interested in good science and truth prevailing than grinding a particular microbial causation axe, so to speak. I was around for the De Freitas fiasco way back when, and I am getting deja vu. Lots of jumping up and down, cheering and arm pumping by the CFS community just before the whole thing went up in smoke. Sadly enough.

    Then the psych lobby vultures descended "en mass" and started doing published study after published study linking CFS with every psychological disturbance from sexual child abuse to bed wetting as the CFS/ME organizations stood by helplessly wringing their hands or worse yet, even assisting the CDC in the demise of ME/post viral syndrome/organic causation as valid explanation for the disease.

    If XMRV is truly linked to CFS/ME, it will take much more than one confirming study to validate the concept in the minds of most GPs. And, to me, even that one confirming study looks pretty unlikely to ever surface in anything resembling its controversial leaked form. Or even get published at all. Time will tell.

  20. V99

    V99 *****

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    That's fair enough. Thanks for explaining.

    They should get this disease even without the cause, very true. Won't give up on that. The science for xmrv is still very strong, and things are moving forward, so I would say right now, there is no reason to give up on that either. Right now is a great time to inform and educate scientists and the public about the disease, regardless of the xmrv issue. We must use this opportunity.

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