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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. bullybeef

    bullybeef Senior Member

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    Why are we surprised, the CDC are at it again, and why is reeves involved???? But we have to remember the UK & Dutch studies; they weren't replication, and that became very clear. The WPI are not a federal agency, and cannot be shut down. The CDC will have to eventually show how they came to these results, and if they don't, they are obviously hiding something. Did they replicate the WPI, NCI, and CC methods? If they didn’t, we cannot count it.
  2. dsdmom

    dsdmom Senior Member

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    I don't think this applies to the xmrv paper. If you read their embargo policy, it looks like they place an embargo on all papers. They release the studies to journalists before they are published but they are not allowed to write about them until they are officially published.

    I don't understand why the hegative study could be released no problem and now the hold up on the positive one? There seem to be 2 possibilities:
    1) The government knows that the positive study is correct and wants to make sure there is a test in place and screening for blood products, etc so there is not mass panic when this is released or
    2) the government is trying to suppress the truth. I hate to be a conspiracy "theorist" but c'mon...this is just weird.

    Maybe we should be emailing Alter and telling him to get on with it!
  3. BEG

    BEG Senior Member

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    Gag. It's cruel and unusual punishment for the CFS population. Publish, don't publish, publish, don't publish, publish, don't publish . . .
  4. Greggory Blundell

    Greggory Blundell *****

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    Is it possible this reflects a punitive measure executed by the DHHS at the expense of the positive studies because details were leaked early? A political backlash or quid pro quo that plays into the hands of the CDC?
  5. VillageLife

    VillageLife Senior Member

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  6. dsdmom

    dsdmom Senior Member

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    CBS - YOu're rigth...they should be stating that xmrv is not a factor in any population, not just cfs. They seem so dead set on proving xmrv could NOT be a factor in cfs. This is frustrating .... and a little bit scary. The government has way more control over our lives than many people realize.

    We need to get the mainstream media interested in this story - I know it's something we talk about all the time - but this is getting ridiculous! Top scientists are silenced...this does not make any sense. We know xmrv is real. It's not fairy dust.
  7. upnorth

    upnorth

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    This is just beyond depressing....Is it a fact that the other paper is now "not accepted"
  8. Esther12

    Esther12 Senior Member

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    A third possibility is that they've found some problem with the two positive papers - or potential problem, and don't want to publish before checing it out.

    That they've decided to go ahead with the negative paper without this being resolved does seem strange though.
  9. dsdmom

    dsdmom Senior Member

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    I just emailed Dr. Alter and encourage you to do the same. it can't hurt.
    harvey.alter@nih.gov

    Let's at least show him that people are paying attention to this.

    here's what I wrote (in 2 minutes - I'm sure it's not great)

    Dear Dr. Alter:
    It is my understanding that your study has been put on hold. Originally it was to build "consensus" among the government agencies, as the CDC was unable to detect XMRV in anybody (which seems odd in itself). And yet now the CDC has published their negative study and you are now claiming yours has not been accepted for publication. However, that statement in itself is untrue; PNAS itself confirms your study was accepted. Why the change?

    It seems preposterous that 1) there is any hesitation to publish conflicting studies - this is done all the time and 2) that the negative study is considered the 'correct' one as it has been allowed to be published and 3) that you need to 'recheck' your data. That seems ridiculous for a seasoned scientist as yourself.

    Please, please PLEASE do not be pressured into being quiet. There is far too much at stake. You are a scientist. There is no place for politics in science.

    PLEASE publish your study.

    Regards,
    ****
  10. shiso

    shiso Senior Member

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    OK, so I just read the paper online (once, and quickly) and 2 things stuck out to me as a totally non-scientific layperson.

    1) Quote from paper:

    The 1994 International CFS case definition and the Canadian Consensus Criteria are different and do not necessarily identify similar groups of ill persons. Most notably, the Canadian Criteria include multiple abnormal physical findings such as spatial instability, ataxia, muscle weakness and fasciculation, restless leg syndrome, and tender lymphadenopathy. The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition
    considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et
    al. study may represent a clinical subset of patients [11].


    These statements undermining CCC as a legitimate criteria for diagnosing CFS patients really confused me. It only raises the question, do these people even know how to identify a CFS patient, are they in denial of the hundreds of thousands of CFS patients who experience the myriad of symptoms and abnormalities encompassed in CCC, i.e. who are these people studying?

    2. The paper's tone of utter confidence and categorical conclusion reflected of no XMRV in CFS patients, no association with CFS, period, combined with its invocation of the notorious negative studies. Really? How do they explain the XMRV+ CFS patients not included in the initial WPI study?

    The science (methods used to look for XMRV, etc.) was over my head, but the suspect criteria used for the study subjects and the almost zealously confident tone of the negative findings combined with the authors' invocation of the notorious other negative studies, by a CDC paper whose authors included William C. Reeves, were not.
  11. Esther12

    Esther12 Senior Member

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    I don't think a torrent of e-mails would be helpful. It would just make him less likely to reply to any imo.

    I guess it depends on whether you want a reply, or want to show that we're interested.
  12. CBS

    CBS Senior Member

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    Discussing the two negative UK studies, the Dutch study and their study the CDC authors state:

    Again, it would be just as valid to say that combined, these negative data do not support the existence of XMRV in the population. The problem is that they know that's highly unlikely given the other positive studies. They are singling out CFS when their results aren't specific to CFS patients. They supposedly set out to test the Lombardi conclusion which was the detection of XMRV, a novel gammaretrovirus, within the population at surprisingly high rates. They would appear less biased if they simply stated that they couldn't find XMRV. But that would make this a question of methodology and not a dismissal of CFS.
  13. anciendaze

    anciendaze Senior Member

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    circular reasoning

    With six studies now failing to detect XMRV anywhere, I think the intended take-home message is that XMRV does not exist outside of laboratory cultures. This is certainly what public health officials want to hear.

    This leads to a cute logical short circuit: if XMRV is not in anyone, except those from whom it was extracted by surgery, there are no infected people, with or without CFS/ME, from whom positive control samples could be drawn. This means there is no way they could validate their assay except by the means which they used to produce negative results - spiking pure samples with tiny numbers of molecules from culture. The use of these samples instead of blood drawn from humans saves them the difficulty of getting their test methods to the level of both sensitivity and selectivity required for finding XMRV in people.

    We're back where we were when DeFreitas tangled with the CDC. They don't want to expend the effort, and they have preceding history of not finding virus to buttress their beliefs.
  14. bullybeef

    bullybeef Senior Member

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  15. muffin

    muffin Senior Member

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    Oh Gee, What A Friggin Surprise!

    The CDC's paper was negative for XMRV. The CDC couldn't find their A$$ with all of the CDC employees looking for it. Discount their piece of rubbish. We knew they would be negative, it was in their best interests (they decided this) to ensure the results were negative.
    Again for the 500th time: The CDC has been so badly discredited in the CFIDS/XMRV arena as well as other areas that it does NOT matter what they say anymore. What IS important are the FDA and NIH papers and ensuring that they are published and not tainted by Fed collusion by the health orgs. That's what worries me, not what the CDC says.

    So I do think we must hit the DHHS head and insist that the FDA and NIH documents are released as is and NOT after a "group grope" consensus thing. They need to keep the politics out of science and quit trying to cover their butts. The entire population of the US (and the world really) is/has been facing down a deadly Retrovirus that does indeed cause cancer(s) and prob. other diseases as well.
    If the Fed health orgs play games with this Retrovirus study then it will damage further Retrovirus research yet again and then millions more will come down with CFIDS and millions more will get the cancer(s) and other diseases. So SCREAM. Scream at everyone NOT to damage real science because of butt-covering. Now is the time or we go back to the mid-1980's and it's DeFreitas all over again.
  16. Bob

    Bob

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    Absence of evidence is not evidence of absence

    I think that I'll just repeat an appropriate phrase that Hillary Johnson uses:

    "Absence of evidence is not evidence of absence."

    The CDC were unable to find any positives at all, which suggests failure of methodology (this is typical of all failed XMRV studies to date).

    So the CDC is unable to detect XMRV. This is nothing to do with CFS or CFS cohorts. If this result was to do with cohorts, then the unpublished FDA/NIH study would not have (reportedly) detected XMRV in 7% of the normal population*.

    *The FDA/NIH study has reportedly found 7% in the normal population.
    http://www.forums.aboutmecfs.org/sh...MBARGOED-STUDIES-REDUX-by-Mindy-Kitei&p=97524

    If this failed study was to do with cohorts, then the CDC would be able to find XMRV at least in some samples, but they just can't detect XMRV at all. This means that the study is a failure of competence.

    If the CDC has said that the WPI used 'atypical' CFS patients, then did the WPI also use atypical 'normal' people as their control samples as well? Is it possible to get atypical normal people I wonder?
  17. muffin

    muffin Senior Member

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    For what it's worth: From the PNAS website, what an "Embargo" means:

    PNAS Embargo Policy
    http://www.pnas.org/site/misc/journalist.shtml#embargo
    Purpose | Eligibility | Conditions
    Purpose
    Every week, PNAS sends out a "Tipsheet" alerting eligible members of the media to forthcoming articles that might be of interest. PNAS makes the full text of all articles available in advance of publication. Distribution and use of advance materials from PNAS is controlled by the embargo policy. This policy is designed to provide news reporters an opportunity to write accurate news stories while ensuring that publicity does not appear prematurely. Through consistent implementation of our embargo policy, we work to maintain a fair and level playing field that gives no one reporter or organization an advantage over others.


    Eligibility
    Staff journalists or freelancers writing for daily or weekly publication(s) and public information officers from research institutions are eligible to receive advance, embargoed material from PNAS. Writers of internal newsletters and suppliers of financial advice are not eligible. Eligible persons must agree to abide by the conditions of the PNAS embargo policy.



    Conditions


    ■Precise embargo dates accompany all advanced materials (typically 3 PM Eastern time the Monday of online publication). Embargoed information is not to be made public in any format, including print, television, radio, or via the Internet, before the embargo date.


    ■Advanced material is for background research only. Journalists may not redistribute the information within or outside their news organization, with the exception that journalists may share embargoed papers with experts in the field for the purpose of obtaining relevant commentary. Embargoed materials must be clearly labeled with the embargo date and time. Journalists are responsible for ensuring that all third parties honor the embargo date.


    ■PIOs may not post, release, or distribute embargoed material in any publicly accessible manner before the embargo date. However, PIOs may distribute embargoed material directly to the media the Wednesday before the embargo date. Distributed material must be clearly labeled with the embargo date and time. PIOs are responsible for ensuring that all third parties honor the embargo date.


    ■Journalists and PIOs should credit "Proceedings of the National Academy of Sciences" as the source of the information. Please note that the articles in PNAS report original research by independent authors and do not necessarily represent the views of the National Academy of Sciences or the National Research Council.


    ■Supporting materials provided by PNAS, such as graphics, audio, and video clips must be credited to the appropriate source. These materials may not be used to illustrate stories unrelated to the relevant PNAS article without express permission from PNAS.


    ■Failure to adhere to this policy will result in revocation of access to all embargoed material from PNAS and the National Academy of Sciences.
  18. CBS

    CBS Senior Member

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    So who is the CDC referring to when they say CFS? Clearly NOT anyone meeting the Canadian Consensus diagnostic criteria!

    Still doesn't explain the failure to detect any XMRV in patients or controls. I suggest that we carefully refuse to characterize the CDC study as a study of CFS patients. Either that or we have to refuse to continue to use the CFS label to describe anyone meeting the CC Dx Criteria.

    Clearly, it's long past time to take the CDC's lead on this and abandon the CDC's label of CFS in favor of the much more accurate label, ME.
  19. Bob

    Bob

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    And it makes you wonder why the CDC were wasting their resources on a different patient group to the WPI if they are so convinced about the existence of different subsets?! Why didn't they use their resources on the same 'clinical subset of patients' that the WPI allegedly tested? I hope that the CDC are now going to use their resources to investigate XMRV in this subset of patients. And to investigate and identify different subsets of CFS/ME. At least they are admitting the possibility of subsets now... is this a new development?

    Of course, all their words are just an irrelevant smokescreen. They were just unable to detect XMRV.
  20. CBS

    CBS Senior Member

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    Tells us more about the CDC than it does "CFS" patients.

    From now on I plan to use "" when referring to "CFS" patients as defined by the CDC.

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