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CDC XMRV Retrovirology Study on CFS Published

Discussion in 'XMRV Research and Replication Studies' started by KFG, Jul 1, 2010.

  1. VillageLife

    VillageLife Senior Member

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    And Andrea whittemore has just posted a message on the CFIDS Facebook page,

    Annette Whittemore
    Thank you Wilhelmina and everyone for saying exactly what I'm thinking ! This is ridiculous!!!
    Andrea Whittemore -Goad
  2. bullybeef

    bullybeef Senior Member

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    Exactly, something has definitely been said. I would like to believe Alter has his hands behind his back. Hillary Johnson blogged that the CDC were putting pressure on Alter’s journal. Have they changed their mind then?
  3. Dreambirdie

    Dreambirdie work in progress

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    Yes, you don't find what you are certain not to. Not exactly SCIENCE, but what more can we possibly expect from someone like Reeves. He is definitely predictable.

    The truth is getting a great big run around for now, but hopefully sooner than later, it will win out.
  4. Wonko

    Wonko Senior Member

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    is that defiance or optimism?


    edit - sorry it appears me is angry after all - but not at you - it's just history doesnt support optimism in this case - so curiousity got the better of me - feel free to ignore....
  5. Dreambirdie

    Dreambirdie work in progress

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    Is that a question or a riddle?
  6. Michelle

    Michelle Decennial ME/CFS patient

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    Danny -

    I too am unsurpised and mostly ambivalent about the CDC's finding. But there was a small part of me, after hearing -- mistakenly apparently -- that Reeves wouldn't be involved with this study -- that hoped this time it would be different. That just maybe we'd finally get some vindication from CDC. What makes this a bit more bitter to swallow is that it's published at the same time Alter is now appearing to back track. Granted, I didn't break out the champagne when I heard about Alter's paper because it wasn't published yet. Quite frankly I don't think I will until my doctor says to me "yes, you're positive for XMRV and here's a prescription for an antiretroviral." But yesterday was a bad day. The nurse for my clinic called to say that they are reducing the amount of narcotic medication I can take, despite a well-established pain management plan developed over years. I suspect budget cuts but am not sure exactly why (I'm on Medicaid). I'm tired of some bureaucrat deciding how much I will suffer, of some dickhead at the CDC deciding how valid my suffering is, of every two years the voters of my state deciding whether they will pay for someone to help me bathe or not, and most of all, this damn disease deciding every fucking last tiny detail of my life.

    Most of the time I haven't really let the up and down of the scientific process of deciding whether or not we do or don't have XMRV bother me. Indeed intellectually I keep telling myself that the wording of this study was quite restrained compared to the Dutch and IC studies. That even they acknowlege they are limited by the fact we still do not have agreed upon positive and negative samples. And frankly, I've found it a bit disturbing at times just how bipolar people on this forum can be -- getting way too excited when they shouldn't and way too depressed when they don't have to.

    But today is just...hard.
  7. dannybex

    dannybex Senior Member

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    She also posted this: " I know everyone is wondering what the heck is going on . I can assure you WPI is working on this :) something should be on website "
  8. Wonko

    Wonko Senior Member

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    sorry it appears me is angry after all - but not at you - it's just history doesnt support optimism in this case - so curiousity got the better of me - feel free to ignore....
  9. glenp

    glenp "and this too shall pass"

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    ty for posting this link

    Ty for posting this, so much easier with the links here

    I have also sent my letter off to Dr. Alter

    harvey.alter@nih.gov
  10. dannybex

    dannybex Senior Member

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    I understand Michelle...

    Totally understand.

    It's also important to remember that this was a very small group of patients -- as was the WPI's study -- so it will take some time to sort out. Always a good idea too not to put all of one's eggs in one basket. Many of us could turn out to be XMRV negative, yet are just as ill as the positives...
  11. George

    George waitin' fer rabbits

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    I don't know, this study is old. It was done before Dr. Reeves was moved and Dr. Unger was placed in charge. But I can't find the acceptance date in "Retrovirology", just the publication date. The whole thing is screwier than a kangaroo in Denmark.

    The study itself is shade of the Kerr study. First they show XMRV positive but go back and run a different test on the positive sample which of course comes up negative. Looks like some 18 positive samples which then get retested in various ways and declared negative. It's a real tap dance.

    Are the PTB's at DHHS trying to buy more time? Or are they really trying to suppress information. I'm usually very up beat but, releasing this old study now has me seriously confused.
  12. hvs

    hvs Senior Member

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    Buying time until they have a good test for people and the blood supply.
    Of course the strategy sucks, but they can honestly say that they were simply publishing all pertinent info, even if this isn't a stellar or revealing study. (And very very unfortunate that news media will report this as a "stunning blow" to xmrv theory and that it will slow funding...)
  13. shrewsbury

    shrewsbury member

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    Hey George, a tap dance indeed - and who's underfoot?

    Thanks as always for sharing your brains

    This is what I found for the submission date (and here's the link to the pdf of the full article under construction)

  14. Impish

    Impish Senior Member

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    Calm down and read the paper. It is using the flawed patient group from Georgia.

    If in fact it is XMRV it will come out.
  15. pollycbr125

    pollycbr125 Senior Member

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    Cort posted this on the email alter thread

    Originally Posted by Cort
    I think all we have are little drabs unfortunately.

    I think Dr. Alter has very good personal reasons to get out his study. His name is all over the Internet in a not very complimentary way. His peers are surely wondering what's going on. He's apparently withdrawn his paper for publication...for his own sake he needs to be able to verify his work and come up with a positive result. I'm sure that he's sweating bullets right now - no researcher wants to be put in the position where his work is publicly disavowed by his own funder....He has a lot of good reasons to make this right.(post 20)

    my comment
    Cort a lot of folk are under the impression that this paper is witheld from publication not withdrawn . Are you saying that the paper has been withdrawn totally and if so can we have clarification of this ie via a link or something(post 23)

    http://www.forums.aboutmecfs.org/showthread.php?6043-Email-Dr-Alter/page2
  16. George

    George waitin' fer rabbits

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    I can always count on you to find the good stuff! Woof!

    (scratch, scratch, scratch,scratch, scratch, scratch,scratch, scratch, scratch, hummm) Now my doggy reply to this is . . . lifting leg. . .ready. . .aim (big grins)
  17. Chris

    Chris Senior Member

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    Is it possible to put a positive spin on the delay of Alter's paper? Might he take the opportunity to include a critique of the CDC / Reeves paper, now that it is published? I would assume that the man who said those things about the WPI and XMRV at a conference a few weeks ago has no particular love of the Reeves doctrine. Possible? OK, a long shot, but I am trying to wrest a bit of sanity out of this crazy situation, and not become 100% cynical about the US medical establishment. Chris
  18. Megan

    Megan Senior Member

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    hvs, I think you're probably right, I hope that's all it is. Only thing is I didn't know my time was for sale. We could be waiting a long time.
  19. hvs

    hvs Senior Member

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    In my humble opinion, one thing to consider in all of this is that most folks calling the shots about which paper comes out when, calling for delays until ducks are in a row, etc. etc. believe that so-called "cfs" amounts to a state of being kinda tired (like the folks pictured in a ll the clipart accompanying news articles or in "Fibro and Fatigue" web banners). They can be perfectly well-meaning doctors and officials thinking they're making decision in the best interest of the public at large, but they're acting without the knowledge that this is a progressive disease that, having wonked-out your immune system, leads to ruined careers and families and terrible physical damage to patients' bodies over the years. Why freak out when the consequences are a little fatigue? And hey, who ain't fatigued in this busy world?
  20. Otis

    Otis Señor Mumbler

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    Folks please don't inundate Dr. Altair with emails. The man is most likely under an extreme amount of pressure. I'm pretty sure his statement about doing more tests was not his idea I have a feeling he's being pressured if not coerced into backtracking. As an aside, I'd like to see an NIH press release rather than just the quote the CAA was apparently provided exclusively.

    It's likely that he saw the handwriting on the wall and provided the initial leak to try to stop his research from being squashed - he's squarely in our corner - but I thing tons of emails from us would just add to his stress.

    Perhaps someone would like to organize a letter of support from the group on another thread that we could virtually sign by adding our names to the thread. You can put me down!

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