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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. muffin

    muffin Senior Member

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    From our wonderful CFSCENTRAL.COM ..more info..

    Wednesday, June 30, 2010 By super smart: Mindy KiteiCDC and FDA/NIH STUDIES ON HOLD
    http://www.cfscentral.com/2010/06/curiouser-and-curiouser.html

    On April 15, 2010, a government source told CFS Central that a soon-to-be-published CDC study hadn’t found the retrovirus XMRV in CFS patients but that another government agency had. The agency that found XMRV in CFS patients—and up to 7 percent of the blood supply—turned out to be two agencies: the National Institutes of Health (NIH) and the FDA, as was leaked last week.


    Today the Wall Street Journal is reporting that the CDC paper, which was accepted at the journal Retrovirology, has been put on hold, as has the FDA/NIH paper, which was accepted at the Proceedings of the National Academy of Sciences. The reason? According to the Wall Street Journal, it’s because “senior public-health officials wanted to see consensus—or at least an explanation of how and why the papers reached different conclusions.”

    In addition, the Wall Street Journal also reported that a spokesman for the Department of Health and Human Services said the research was being reviewed to ensure “accuracy” and “relevancy of the scientific information.”


    Some insiders say that this is a face-saving move to come up with a plausible explanation for the disparate XMRV findings and to present a united front so as not to confuse the public about blood safety.

    The CDC has had a problematic year where CFS is concerned. The long-time CDC principal investigator for CFS research Dr. William Reeves was reassigned on February 14, which many critics believe was because the scientist was embarrassing the agency. After Dr. Judy Mikovits's paper linking XMRV to Chronic Fatigue Syndrome was published in Science in October, Reeves told the New York Times: “We and others are looking at our own specimens and trying to confirm it. If we validate it, great. My expectation is that we will not.” Reeves also told the Times that the culprits behind CFS were more likely sexual and emotional abuse and an inability to handle stress.

    Privately, insiders have told CFS Central that they did not expect the CDC to find the retrovirus because the agency’s CFS definition has been watered down from one neuroimmune disease to five different combinations of depression, insomnia, obesity and “metabolic strain,” as Reeves himself explained in a 2009 paper. In a 2008 CDC paper, “An extended concept of altered self,” Dr. Jim Jones argued that illnesses such as CFS are “illness states” rather than “true diseases.” A CDC paper from 2006 on coping styles found CFS patients guilty of “maladaptive coping” and “escape-avoiding behavior.”

    If the CDC had found the retrovirus, it would have negated its 20-year affair with CFS as a psychological problem. Now that two other government agencies have found XMRV and other studies due out this summer have also found the retrovirus, critics point out that the CDC is in a no-win situation and beginning to look like the odd man out.
     
  2. Jerry S

    Jerry S Senior Member

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    From Mind Kitei's June 30, 2010 blog "CDC and FDA/NIH Studies On Hold":

    http://www.cfscentral.com/

    The CDC now admits that their CFS program has been studying nothing in particular for over 20 years. This is beyond outrageous.

    And, they don't know how to find XMRV. It's on the record.

    ETA: Ah, muffin, I see we posted the same thing. It really says it all, doesn't it? I sent a small donation to Mindy Kitei when I read this yesterday.
     
  3. CBS

    CBS Senior Member

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    There is also a logical flaw in how this is phrased. You simply cannot can't be excluded and then still considered a subset.

    According to the CDC's statement, these two groups, patients who meet the Canadian Consensus Dx criteria and those meeting the 1994 CDC definition of CFS are two independent groups.
     
  4. eric_s

    eric_s Senior Member

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    Dr. Hohn???

    One more thing that just came to my mind

    Dr. Hohn has now participated in at least 3 studies

    1.)
    "Lack of evidence for xenotropic murine leukemia virus-related virus(XMRV) in German prostate cancer patients"
    http://www.retrovirology.com/content/6/1/92

    2.)
    "Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract"
    http://www.cdc.gov/eid/content/16/6/1000.htm

    3.)
    "Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States"
    http://www.retrovirology.com/content/7/1/57

    In 1.) they were unable to find any evidence of XMRV. In 2.) they found it in ~ 2 - 10 % of people with RTI and 3.2 % of their healthy controls. Now in 3.) they did not find any evidence at all.

    This means that Dr. Hohn knows how to find XMRV and that he is aware of the fact that it should be found in at least around 3% of all samples, unless XMRV only appears in geographical clusters.
    It might be that 3.) was completed before 2.), so back then Dr. Hohn did not know what he knows now.
    But either way, 3.) has not been published until today.
    So at least one of those authors (Dr. Hohn) must be aware of the possibility of the conclusion of 3.) being wrong.
    So why is it that study, that is being published now and not the one done by Dr. Alter or none of them? There must be doubts about 3.)'s quality. If i were Dr. Hohn i would want to test the people in 3.) with the methods used in 2.) before i say that they are XMRV negative.

    Dr. Hohn works for the RKI in Berlin and i speak german. I might try to ask him about those studies, but it would take some time, i have a lot of things to do right now and if i do this i want to do it well.
     
  5. anciendaze

    anciendaze Senior Member

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    Mere semantics. And, we already know the CDC is not interested in making meaningful statements concerning CFS. It is likely they are actually proud of semantically empty publications.

    I also think they're right about our having “An extended concept of altered self.” It comes from being cut off at the knees whenever you mention CFS to them.
     
  6. Jerry S

    Jerry S Senior Member

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    Thank you, CBS. Yes, it's totally illogical. They can't even keep their story straight within a single sentence.
     
  7. muffin

    muffin Senior Member

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    SickofCFS: In periods where I am mad as hell, I do think about getting out the syringes and pulling my own CFIDS sick blood and using them as a weapon against the CDC naysayers.
    Now I would NEVER really do that since it is just plain sick, crazy, and violent (and I knew when I first got sick NOT to give blood, asked the drs. phlebs to double glove, or even never let anyone near my mouth or share food/utensils, etc). BUT, hey, if they don't believe in CFIDS and XMRV, then have a pint of my blood. I'm in the "universal donor" blood group so anyone can have my blood. Maybe I will send a pint of my lovely blood on ice to Reeves in case he ever needs blood super fast. Might save his life...

    Maybe we should all suggest that the AABB suggestions on not donating blood are wrong and we should be encouraged to do our civic duty and give blood. Is the CDC having a blood drive soon? We could just hop to the CDC and give our non-diseased blood. I would wear a placard to the blood drive that said something like "I have CFIDS but the CDC says it doesn't exist, not to worry about my blood!"
     
  8. Esther12

    Esther12 Senior Member

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    Hmmm... so he was one of the respiratory track guys? This is a mess. You could be right about the CFS study being completed a while ago. It could also be that XMRV is easier to detect in the respiratory track than in blood samples.

    Ugh... this is going to take ages to sort out.
     
  9. Recovery Soon

    Recovery Soon Senior Member

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    I'm all for this approach if the NIH FDA paper is squashed or reversed. Totally serious.

    Want front page news- that'll do it.
     
  10. taniaaust1

    taniaaust1

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    LMAO .

    On a more serious note.. that is what they were/are apparently doing in china with the mysterious disease that guy came to this site and told us was killing people. Gov. wasnt paying notice so some were setting out to contaminate others.
     
  11. hvs

    hvs Senior Member

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    Please take that unethical talk off the forums. The rest of us want nothing to do with infecting kids.
     
  12. anciendaze

    anciendaze Senior Member

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    And not by accident. Several features of this current debacle can hardy be expected to last long. This is a classic maneuver to buy time. I'm only afraid they hope to buy enough time to retire with full benefits.
     
  13. Esther12

    Esther12 Senior Member

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    Do I feel healthy? Well, I'm a bit upset about my childhood but other than that I'm fine.
     
  14. muffin

    muffin Senior Member

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    HVS: We are letting off steam. NO ONE on this forum would ever be so cruel as to donate blood. No one. I think we all would rather die than see just one other person infected with CFIDS/XMRV because of our behavior.
    This is deep seated anger at the CDC and nothing more. It is in my will, my purse, and medical directives that NO ONE is to get my organs or blood. I would not even wish CFIDS on my worst enemies and I would love to do some rotten things to them but NOT CFIDS. And esp. NOT CFIDS to the young ones.
    Living in a state of hell for years and decades makes people very angry. I have slept 16 years of my life away and it's all due to the CDC. But hurt another person with my blood? Never!
     
  15. Mark

    Mark Acting CEO

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  16. muffin

    muffin Senior Member

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    Esther is funny!!!!

    "Do I feel healthy? Well, I'm a bit upset about my childhood but other than that I'm fine."
    LMAO!!!! Thanks for that!
     
  17. Finch

    Finch Down With the Sickness

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    Can we donate blood? Of course not. I have only to think of my father, who recently received several units of blood following surgery and a resulting period of critical illness. I'm not willing to infect him, nor any other good person who is in need of blood. Threatening to do it is one thing, but actually doing it is quite another.

    The question I have is why, when all here can see the discrepancies and weaknesses in the CDC's paper, was it judged as qualified to be published?
     
  18. Michelle

    Michelle Decennial ME/CFS patient

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    Didn't somebody say that the CDC study was finished 6 months ago? So could it indeed be possible that Dr. Hohn finished the respiratory tract study AFTER the CDC study?
     
  19. George

    George waitin' fer rabbits

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    Well, It's not a replication study in any way, the same methods were not used at all but information from the Lombardi paper was used to develop their testing methods. It's a validation attempt only.

    I could be wrong about the FDA and NIH being separate papers or studies. But FR states very clearly that there are three separate studies that validate the XMRV/CFS-ME connection. That's why they were lecturing and recruiting for further studies into disease mechanism. So if the FDA/NIH is only one study where is the third positive study???
     
  20. anciendaze

    anciendaze Senior Member

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    I think we've identified the original source for the psychoneurotic theory of CFS used at CDC, Jim Jones;)
     

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