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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. George

    George waitin' fer rabbits

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    Actually the Dutch journalist "leaked" the slide and the a couple of papers picked it up but only Amy at WSJ has investigated anything. And she's reporting what she's been told by the people she's called.

    Does anyone know if Amy has a friend or relative with CFS?? Cause the WSJ usally has something about CFS every couple of months.
     
  2. PoetInSF

    PoetInSF Senior Member

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    This probably was a sarcasm, but you can't draw any conclusion other than about the hypothesis. And the hypothesis in this case was that XMRV is associated with CFS, not XMRV exists in the population. You can certainly question the study for not finding any XMRV, but I'm afraid the sample size was too small for that, even if 2-7% is an accepted figure.
     
  3. Otis

    Otis Señor Mumbler

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    Great point. The other things that's happened is the complete gutting of newspaper staffs. There's no one left to dig, dig, dig at most newspapers. Journalism as a career choice is a pretty bleak one right now. Look at the Chicago Tribune. We get a food reporter telling us not to take anti-retrovirals.
     
  4. George

    George waitin' fer rabbits

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    Talking About Papers

    Talking about papers that have been published and not published . . .

    There are 5 negitive studies that do not correlate CFS and XMRV according to Dr. Ruscetti

    1- Erlwein O, Kaye S, McClure MO, Weber J, Wills G, Collier D, Wessely S, Cleare A.
    PLoS One. 2010 Jan 6 Total 0 CFS 0 HC

    2-Groom HC, Boucherit VC, Makinson K, Randal E, Baptista S, Hagan S, Gow JW, Mattes FM, Breuer J, Kerr JR, Stoye JP, Bishop KN.
    Retrovirology. 2010 Feb 15 Total 1 CFS and 4 HC

    3-van Kuppeveld FJ, de Jong AS, Lanke KH, Verhaegh GW, Melchers WJ, Swanink CM, Bleijenberg G, Netea MG, Galama JM, van der Meer JW.
    BMJ. 2010 Feb 25 Total 0 CFS and 0 HC *

    (*caveat is that WPI found 2 XMRV positive from 10 samples sent to them by Van Kupperveld which was omitted from the original paper)

    4-The Hubner study which has not been published at this time but which was leaked by Dr. Hubner and is reportedly a zero/zero study

    5- The CDC paper which was completed early on and is a zero/zero paper


    _______________________________________________________________________
    According to Frank Ruscetti there are "three" positive papers. We know the first one

    1-Lombardi VC, Ruscetti FW, Das Gupta J, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA.
    Science. 2009 Oct 23;326(5952):585-9. Epub 2009 Oct 8. Total 68 CFS 8 HC **

    But what are the other two? Is FDA/NIH one study or two? And if it's one then what is the other study? Dr. Ruscetti isn't going to tell a bunch of researchers that there are two more studies that link CFS/XMRV just to fill up time.

    _______________________________________________________________________
    There are two additional studies often referenced by Dr. Mikovitz in talks reporting numbers in FAMILIAL illnesses including CFS families with members who have Autisum, MS, and Fibromyalgia this paper has been ready for publication and passed peer review, according to Dr. Mikovitz since February and a second study that uses the same Science cohort that reports a 98% incidence of XMRV in CFS patients that has also been review and ready to be publish since February.

    Where are they?

    In addition to this the Dr.'s Light / Bateman have a study that they started in March which is a patient cohort of 200. (See CBS for more information)

    And the Glaxo-Smith-Klien study that was started end of March or 1st of April.

    This is a list of the papers to be presented at Cold Springs Harbor Laboratory (thanks for the correction, grins)

    From http://www.virology.ws/2010/05/07/xmrv-at-cold-spring-harbor/
    One of these is the meeting on retroviruses, which will begin on 24 May 2010. Below is a list of the presentations about XMRV, the new retrovirus implicated in prostate cancer and chronic fatigue syndrome. The author presenting each study can be found at the meeting website.
    Failure to detect XMRV in human prostate tumors
    Development of a multiplex serological assay to detect XMRV antibodies
    Characterization of cellular determinants required for infection of XMRV, a novel retrovirus associated with human familial prostate cancer
    Screening mouse genomes For XMRV-Like Elements
    Development of highly sensitive assays for the detection of XMRV nucleic acids in clinical samples
    Compounds that inhibit replication of XMRV, a virus implicated in prostate cancer and chronic fatigue syndrome
    Investigation of XMRV as a human pathogen
    Investigations into XMLV-related virus infection
    XMRV is not detected in Quebec patients with chronic fatigue syndrome
    Wild-derived mouse strain (Mus pahari) as a small animal model for XMRV infection
    XMRV tropism in hematopoietic cells
    Evidence for sequence variation in XMRV
    The human retrovirus XMRV produces rare transformation events in cell culture but does not have direct transforming activity
    The XMRV is inhibited by APOBEC3 proteins and anti-HIV-1 drugs
    Immune responses in XMRV-infected rhesus macaques—Serological markers of XMRV infection
    XMRV Is inhibited by interferon independently of RNase L or Tetherin
    Comparison of XMRV infections in humans and rhesus macaques
    Susceptibility of XMRV to antiretroviral inhibitors
    Integration site analysis in XMRV-positive prostate cancers
    Xpr1 is necessary but not sufficient for XMRV entry
    Effects of interferon regulated proteins, RNase L and APOBEC3G, on XMRV replication

    The retrovirus community has clearly embraced XMRV, a virus discovered just four years ago. This high level of activity means that there will be many papers on XMRV in the scientific literature in the next year. I’m looking forward to discussing them with the readers of virology blog.


    (big dog sigh) Where have all the papers gone? I swear I didn't eat them!
     
  5. muffin

    muffin Senior Member

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    then let us all complain to that journal about their lack of standards and ethics in printing garbage from the cdc.
    Have to keep complaining to everyone - the right people. So...let's start emailing these guys and tell them that the cdc article was not fit to print.
     
  6. cfs since 1998

    cfs since 1998 *****

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    It's not too small assuming at least a 3% population prevalence. If the population prevalence is 3% then the probability of nobody in a random sample of 104 people having XMRV is only 4.2 percent, in other words p < 0.05, making random chance an unlikely explanation for CDC's result.
     
  7. taniaaust1

    taniaaust1 Senior Member

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    I knew from the start this was going to happen.. a reason why it was important not to get hopes up too much over all this, many have tried to warn others who may not have have CFS as long or not know its history of all the corruption which has gone on with it. There is too much corruption out there with Wessley and the CDC who will do all they can that this illness remains psychological.

    It is now the age of computers and we arent back in the 1980s but corruption remains and thou the truth can get out faster now, the misconceptions can be kept being put out there just as fast.

    It's time for everyone to start fighting and try to get CFIDS out of the hole it's been in since the 1980s. This is your life.. fight for it...just as you already have to fight to survive.

    I suggest that people start arranging layins in front of the CDC.. get this to public attention, get this to reporters attention. Get out there that the CDC didnt actually do replica studies. That negative study may end up sitting there and haunting us for the next 5-10 yrs if we dont get this all out there. Now's the time to fight in sensible ways.

    (People actually threatening to infect the blood supplies... all that will do is make the general public think we are crazy and confirm to them that CFS is psychological. We need to be sensible).
     
  8. judderwocky

    judderwocky Senior Member

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    He's won a bunch of awards and stuff... pretty amazing fellow...
     
  9. judderwocky

    judderwocky Senior Member

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    This has been added to the petition :

    ** UPDATE: Dr. Alter states that he is subjecting the paper to additional scrutiny and tests. Yet questions remain - if the paper was good enough the first time, why does it suddenly need additional procedures and scrutiny (not applied to the CDC paper)? It is still unclear what pressure is being forced on this paper outside of the peer review process (specifically from the DHHS and CDC), and until that is made clear we must continue to press our elected officials to direct the studies to be released. Undue burdens placed on the NIH and FDA paper must not be allowed to circumvent the self-correcting nature of the scientific process.


    NEW PETITION TEXT

    I am writing today to request your action on a public health concern. Recently a link has been found to the debilitating disease Chronic Fatigue Syndrome (CFS), and a retrovirus, X-MRV. X-MRV has also been implicated by recent research in the development of aggressive prostate cancer. Since the original findings published in the prestigious journal Science, several groups have produced conflicting results. The Wall Street Journal has reported however, that the NIH and FDA were able to confirm the findings (underneath the direction of the NIH scientist who discovered the Hepatitis C virus, Harvey Alter). The Wall Street Journal has also reported the studies are being WITHHELD, as the CDC was unable to duplicate the findings as well.

    Tell the DHHS to allow the NIH and FDA to publish their papers without undue procedures and hurdles. Preventing these papers from being published diminishes the trust of CFS Patient groups in the CDC and its willingness to deal honestly with this disease. To allow CFS patients and those with Prostate Cancer the best hope of fighting their illness, we must have the best scientific information that our government is capable of producing. Allow the findings to be released with all speed and tell the DHHS to stop playing politics with science.

    Thank You,
     
  10. dean

    dean

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    The answer is one word. Pharmaceuticals.
     
  11. judderwocky

    judderwocky Senior Member

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    The WSJ senses that the retrovirus is the cause... go on yahoo finance... wherever there is money , there is the WSJ... they've been debating the impact this will have on the pharm companies for a while... they seem excited. almost as much as us. go figure.
     
  12. taniaaust1

    taniaaust1 Senior Member

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    Yeah it does always come out but when.. 1yr, 2yrs, 5 yrs, 10yrs, 20yrs . They thought the world was flat for a very very long time thou some didnt think that was the case.
     
  13. Megan

    Megan Senior Member

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    From the above WSJ article:
    “John T. Burklow, a spokesman for NIH, says the FDA-NIH paper has been accepted for publication but that the authors decided to pull it back to conduct additional experiments. Publication will depend on how long it takes to fully address questions.”

    From the above link
    "According to John Burklow, director of the NIH Office of Communication and Public Liaison, these additional experiments were a condition of acceptance by the journal, Proceedings of the National Academies of Science USA (PNAS), and may take weeks to complete and review. Mr. Burklow is confident that the results will be published, and stated that all the collaborators are working expeditiously, but carefully, to ensure the accuracy of their results and the manuscript. The CFIDS Association has confirmed that additional reviewers for the paper were recruited as recently as two weeks ago."

    Was the paper accepted or not? The WSJ journalist appears to have double checked her information with the NIH since publication of the first article and confirmed that the article had been accepted by PNAS. Yet this is at odds with what the the NIH (John Burklow) are telling the CAA and what they are posting. Is the CAA able to seek further clarification on this? Can they ask PNAS for a statement? Are the additional reviewers PNAS reviewers or someone else?

    It appears to me that even if PNAS have now changed their minds about accepting the paper (and it's not clear that they have), then they have changed their minds after government interference on the issue. This is still unnacceptable.
     
  14. Michelle

    Michelle Decennial ME/CFS patient

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    Nature says that

     
  15. taniaaust1

    taniaaust1 Senior Member

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    Maybe cause of the outcry that the CDC was holding back on the study. The public outcry probably forced it to be published.
     
  16. alex3619

    alex3619 Senior Member

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    Hi Tania,

    There is nothing to stop a large group of us (if we can find any well enough people, a large group of CFSers can sometimes be just a few) going to the CDC or a blood bank and asking why they cannot give blood if there is no virus. This is a media stunt, to attract attention, and not about hurting people. As such, it should be publicised well in advance, or at least a few emails to the local and national media. It could also serve to highlight the fact that in the USA people who are xmrv+ can still legally give blood and many are doing so. CFS and ME patients are dwarfed in numbers by those who are well and xmrv+.

    It remains to be seen whether or not the CDC is still in the biopsychosocial camp. Certainly their latest paper is corrupted science (they had no chance of finding xmrv so they didn't, no surprise), but this was old and submitted at the end of March.

    Bye
    Alex

     
  17. taniaaust1

    taniaaust1 Senior Member

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    But maybe the no panic or worry is cause the general public dont currently believe in the XMRV threat.
     
  18. judderwocky

    judderwocky Senior Member

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    originally they were saying it was in print... i know i read that somewhere... somebody is changing their lines.
     
  19. taniaaust1

    taniaaust1 Senior Member

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    But a quote which came from someone high up in the blood banks at their meeting said that they were more concerned about public reaction then safety!!. I take the statement i read from their meeting to mean that they are prepared to put tameing down public reaction before anything else. Have you seen what was said at the blood bank meeting?? (i'd provide the link.. its on the main blood banks site on a fpd file, but i dont know where it is now, maybe someone else here can give you the link to it)

    So that means they may even agree to take blood if hard pressed, to "prove" its safe (they can destroy it later and no one would know!!! i dont doubt someone may do that). So this all could backfire quite dramatically and go the other way for anyone who does that. What happens if all it does is show that they will take our blood, the blood of ones who "probably" ONLY have a psychological issue?? (it may play right into their hands). It could generate media attention of "CFS paranoia" and have Wessley then doing his little spill on it all.

    Then those who try to make us out to look crazy.. will just then use this incident to further back up their views.
     

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