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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. judderwocky

    judderwocky Senior Member

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    reeves?

    what is he like undead at this point?


    (also... shameless plug for the petition BELOW)
  2. pollycbr125

    pollycbr125 Senior Member

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    I too have put a post on the CFIDS wall


    http://www.facebook.com/CFIDSAssn

    Sorry but this is turning into a farce posting little dribs and drabs on facebook is not good enough. We need official statements of substantial length to explain the exact situation as it stands at the moment from all parties involved . This is becoming extremely frustrating for patients and my worry is that this will make some patients relapse badly . Everything is up in the air with nobody really knowing what the hell is going on . this is not aimed at you personally please do not take it that way , but I am in contact with several patients and there are patients in floods of tears at this moment in time , patients becoming severly depressed , I am seriously concerned that the lack of information it is putting patients at risk.
  3. Esther12

    Esther12 Senior Member

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    If I wasn't able to find the nonsense the surrounds CFS funny it would have driven me crazy long ago.

    At this point, you've got to laugh.

    I'm taking an internet break to go enjoy some music and do some tidying. I was getting sucked in to quater-hourly google searches. Take care of yoursleves people.
  4. bullybeef

    bullybeef Senior Member

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    I our state of our health has never bothered them, and I doubt they're going to start to care now, polly.

    HTLV-2 has been left to it's own devices for 30 years, and I bet there are many people out there whom are infected. I mentioned HTLV-2 to my GP, and suggested they still don't know exactly what it does. She replied, "so they say!"

    Maybe they’re thinking about leaving XMRV to chance, they’ve done it before. I just think too many people are infected with XMRV, and it has gone past the tipping point of control. If they cannot stop or prevent it, why not ignore it then. They are probably saying, “Well people aren’t dropping dead of it in the street!!”
  5. muffin

    muffin Senior Member

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    USA!
    Kathleen Sebelius Secretary, US Department of Health and Human Services (DHHS)

    No more on blood donation, etc. What we now must do is to get to the DHHS and insist that the two studies by FDA and NIH go out as is and NOT by a group consensus to save face. We need to beat the drum that science must prevail and NOT politics or butt-saving for CDC and the Federal government health organizations.
    Does anyone have Sebelius' email address? HHS "owns" the CDC, FDA and NIH. Right?


    http://www.hhs.gov/ogc/contact/contacts.html
    Kathleen Sebelius Secretary, US Department of Health and Human Services (DHHS)
  6. muffin

    muffin Senior Member

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    Judderwhocky is funny too!!!

    reeves?
    what is he like undead at this point?

    another LMAO!!!
  7. George

    George waitin' fer rabbits

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    Not funny he is every where in this paper.

    Was this done before the February 15th move of William C Reeves to the other department?
  8. Bob

    Bob

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    Yes, the wording of their conclusions seems to betray the motivations behind this research... It seems to me that they want to bury the problem of XMRV as it relates to CFS... No surprise there then.
  9. bullybeef

    bullybeef Senior Member

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    I think Alter has pulled his own paper, muffin. Last week he said it was about to be published, and today said:

    Our paper has not yet been accepted for publication.

    It is a complete contradiction, in just over a week. Our future could be in the hands of one man now, Dr. Alter, and I doubt emailing him would cause him to have a change of heart. It is not about science anymore. We all knew the CDC paper would be negative, but by then we were privy to Alter’s leaked paper. He became our shining knight, and I certainly didn‘t believe he would ever consider changing his results to suit anyone. I thought his agenda was the donor population, and blood safety.

    But if he 'rewrites' his paper, and concurs with the CDC, we could be doomed!!
  10. muffin

    muffin Senior Member

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    FINCH: Sorry about your Dad.

    All I need to do is to think about my beautiful, bright 9 year old niece and adorable 16 month old nephew and it makes me even more nuts that they may get CFIDS.
    It's over for me, but not for the young ones. So that's why I keep fighting. The young ones -- I could lay on the floor and cry thinking about THEM and other children/young people getting CFIDS.

    Just go into a state of despair and sob...
  11. Mark

    Mark Acting CEO

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    Esther you really do crack me up sometimes, I'll join in the thanks.

    As for myself, near enough everything I've got wrong with me is "bizarre" and "impossible" apparently, so if the general public don't mind bizarre and impossible blood, then maybe they'd accept mine. Does their questionnaire have a box for "other bizarre and impossible symptoms"?
  12. muffin

    muffin Senior Member

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    WHY was the CDC so damn stupid

    as to put William Reeve's name on this document? It's a dead give away to all of us of what they are doing. So damn stupid. They really don't care and they really hate and area terrified of us.
  13. anciendaze

    anciendaze Senior Member

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    I want to make it clear at the outset, I am appalled that anyone would suggest infecting innocent people with this nightmare.

    However, I've thought of one lever to use to move the CDC off dead center. If many CFS/ME patients were to write and thank them for clarifying questions which have stopped us from donating blood, (which is always in short supply,) and state they now want to do their part for public health, I believe the CDC would be forced to make a public statement qualifying published findings and urging caution. I am completely serious.
  14. Finch

    Finch Down With the Sickness

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    Thanks, Muffin! He's slowly recovering, but every time I saw them hang one of those bags, although I knew it was to help him, I did cringe inside wondering what might be in there. I was in that state of despair for a few months and have just recently emerged. Hopefully I'll become more active here again. The news is picking up, I see. The good will come, but I know we can't afford to be too patient. Too much damage has been done to us already.
  15. Levi

    Levi Senior Member

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    This was all in the pipe last November:
    http://well.blogs.nytimes.com/2009/...ers-vindication-in-a-virus/?apage=10#comments
    Dr. Alter is probably asking himself right now, why throw away my career?


  16. I think another question to ask is why CFIDS.org is making statements on behalf of Dr. Alter from the NIH, when the NIH has put out no such release (that I can find). The statement completely contradicts everything published previously, but CFIDS is a tertiary source. There's no electronic record in public from the NIH releasing info about Alter.
    So who is CFIDS.org serving by releasing that statement third hand?
  17. Otis

    Otis Señor Mumbler

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    Well, I wasn't big on conspiracy theories but everything up to this last statement made me believe Dr. Alter was intent on publishing, that it was accepted.

    Then we get a "hold" and then he backtracks.

    If he's backtracking I honestly don't think he's doing this of his own accord.
  18. bullybeef

    bullybeef Senior Member

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    Great point, BRC, I cannot locate Alter's quote anyway, apart from CFIDS Facebook page. It seems ME charities and showing their agenda here. They are only there to keep an eye on us, and feed us with false propaganda.
  19. Recovery Soon

    Recovery Soon Senior Member

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    You don't speak for anyone but yourself.

    It is LEGAL for us to donate blood if you haven't been paying attention. "Healthy" people are already infecting kids at a rate of 3.7 - 7%.

    And they won't stop getting infected until the media gets a very loud message and forces the powers that be to stop this insanity.

    Wake up.
  20. anciendaze

    anciendaze Senior Member

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    What about research on those exclusionary conditions?

    It takes me a while to think things through, for reasons everyone here can appreciate.

    What just hit me is the absurdity of one line of argument in that CDC paper. If the patients who tested positive for XMRV in the Lombardi study had conditions which would have excluded them from the CDC study, the correlation between XMRV and the exclusionary physical problem must be exceptionally strong. The rate would have to be close to 100% to get 68% in a subset. A biological link between half a dozen previously-unrelated disease would be even more exciting.

    The next inference is that responsible public health officials should be investigating those "real" illnesses with considerable urgency. Any evidence of this?

    Now we come to the killer question: how is the CDC going to investigate those conditions if it can't find XMRV?

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