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FDA/NIH XMRV paper ON HOLD

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CBS, Jun 29, 2010.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Kurt,

    You know very well that obstructing science on ME is practically their full-time job!! Statements like this are very misleading for people who don't know the history of these agencies. Please do not post untruths like this!
     
  2. Dr. Yes

    Dr. Yes Shame on You

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    Kurt, perhaps full disclosure, as you did once before, of the extent and type of your involvement in 'government research' would prevent past overestimations of your level of experience from being repeated. With all due respect, Dr. Coffin likely has a great deal more experience in this subject than you or I do, and his opinion on just how "unusual" this action is quoted in the WSJ piece.

    There are major differences between how research is handled in military versus non-military government agencies. I have personal experience with a research proposal to NASA and with scientists at NASA-Ames Research, where the scientists potentially have zero control or intellectual property rights to their studies; everything they produce is vetted by several layers of organization and security and is usually initially classified and owned by the US government. That is a far cry from what happens at the NIH or the CDC; I have also spoken to Dharam Ablashi (co-discoverer of HHV-6) when he was a scientist at the NIH, and am fairly familiar, thanks to him, with the level of political obstruction and bureaucracy there. But nothing he described comes close to what is going on here. This action is absolutely, emphatically not business as usual for the DHHS. If you can think of a comparable example, please share it.
     
  3. Sean

    Sean Senior Member

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    It certainly tends to in the short term, but not in the long term.
     
  4. kwietsol

    kwietsol

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    Yes, Dr. Yes!

    And thank you.
     
  5. Hope123

    Hope123 Senior Member

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    Well, this doesn't strike me as "business as usual" government lab or not. I can well understand the FDA/NIH and CDC not communicating with each other over studies as governmental agencies might not be well-coordinated but to then have DHHS decide at more of less the last minute to have both studies held for publication makes me suspicious (and I am not much of a conspiracy theorist).

    Kurt, IIRC, your area of expertise is not biology or its related fields. While you are obviously welcome to comment about your governmental experience (and have contributed good comments on studies), what occurs in one governmental area might be different from another. Having experience in academic/ private/ community-based/ govermental healthcare sectors, I know the culture for each one differs even within one field.
     
  6. glenp

    glenp "and this too shall pass"

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    Thank you for posting this Muffin. Its important that we see this. It helps to prevent it and the Dr. Freitas discovery from being ignored again. They will have a harder time ignoring it if we continue to post and inform people - it will not be as easy now that we have the internet

    glen

    The Tuskegee Syphilis Experiment http://www.infoplease.com/ipa/A0762136.html
     
  7. judderwocky

    judderwocky Senior Member

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    i have to agree... this NEVER happens in science... to toy with something that should be in print is BEYOND reprehensible.
     
  8. judderwocky

    judderwocky Senior Member

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    "It is senseless to block publication because the two papers reach different conclusions. If both manuscripts were subjected to proper peer-review, and were deemed acceptable by the referees, then they should be published. The journal editorial offices must respect the opinions of the reviewers. By overriding their decisions, they have compromised the entire peer reviewer process.

    Blocking publication also sends the wrong message to CFS patients, to the public, and scientists. Not only does this action raise suspicions about their motives – are they trying to publish only the result they believe is correct? – but it ignores the very important fact that science is self correcting. Scientists are humans, and they make mistakes. But eventually the right answer will come to the surface. And that is why PNAS and Retrovirology should respect peer review, publish the XMRV papers, and let science correct itself "
    - Vincent Racaniello Ph.D., Professor of Microbiology at Columbia University Medical Center

    When any of those layers affect what should be published... then that is POLITICAL and not science. I have worked in a number of research labs myself... across a bunch of different fields. This sort of interference is beyond the peer review process. TO interefere with that is to toy with the fundamental ethical considerations of science. End of discussion.
     
  9. alex3619

    alex3619 Senior Member

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    Hi Melodie,

    I have moved this to a new thread. Actually, it took only about an hour to write. I think I do things differently to most of us. I think about it for many weeks, think about it with every new post I read on forums, and when I am ready I know what I want to say, I just have to type it and iron out the little problems. I have been thinking about this post since April (before I even joined PR), and just waiting for the publication of a verification study or something similar. The DHHS debacle was the trigger for me. I still have to track down every single politician I want to send it to, that might take a day or three anyway. Then I will have to decide which Australian media outlets are reputable enough to be able to do a fair job of research if they are interested.

    Here is the thread:
    http://www.forums.aboutmecfs.org/sh...-Australian-Health-Minister&p=97645#post97645

    Bye
    Alex

     
  10. glenp

    glenp "and this too shall pass"

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    Sickofcfs - Thank you for clarifying how most labs work

    It is beyond me how a negative study is published when contradictory results are known and then a possitive study is not. To me this is the key that something is VERY WRONG. If the Dutch negative study had also been held back I woud be thinking differently This is NOT right, not consistent

    glen

    glen
     
  11. alex3619

    alex3619 Senior Member

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    Hi glenp

    I think I am as annoyed as the rest of you. This is not how science as done, and if it is considered usual then the usual is very wrong (which is often the case in government).

    However, the DHHS has overarching responsibility for all three research groups, if I am understanding the commentaries correctly. The NIH and FDA are saying one thing, the CDC is saying the opposite. That is why there is a delay, because they haven't figured out yet that something is very wrong at the CDC. My view is that they should encourage all to publish, and let the scientific debate sort it out.

    The good news: we finally have DHHS interested in the outcome, and not ignoring us.

    Bye
    Alex

     
  12. Melodie

    Melodie Guest

    This is at post #170:
    I wonder if there was a date given for the statement.
     
  13. glenp

    glenp "and this too shall pass"

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    I agree publish all. That is the only way we are going to find out. Obviously some are doing the testing differently. Denying it is absurd. I do not know how they are able to do this legally? Do we have any lawyers here?

    glen
     
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    If it has already been said, sorry.

    Don't worry that it isn't published. Thanks to good journalism. We know and other researchers with an interest know. It is in the history books, waiting for the next book from Hillary. Only this time, I hope the ending is different. Either way, it is out.

    Secondly, I think we may have found a new ally. Remember when the three stooges worked with the same goal Strauss, Wessely and Reeves? (I don't know if they were all in position at the same time, I am speaking of their attitudes, concurrent or not) Welcome to the stage Dr. Alter. Don't you just know he is hot now. His study, which he reported on at a conference, which was put out to the public, which he then confirmed to a journalist is approved for print, has been pulled. Not because of a problem with his study or methods, but because CDC disagrees.

    Alter, just follow the rabbit and he will take you into the hole of CFS land. We have many characters here. Watch out for the mad hatter, he's goofy. And the queen, forget about it. It's a whole different world where we live.

    Tina
     
  15. Anyone else wonder what the G8/G20 would have looked like if the NIH/FDA study had been published?
     
  16. acer2000

    acer2000 Senior Member

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    If they couldn't find it in 22 samples from "independently confirmed positive controls from different labs" - wouldn't that mean that their particular methodology isn't able to detect XMRV at all?

    You'd think that even if they weren't able to find it in their cohort of patients, if their test worked they would be able to find it in samples already known to be positive... I wonder what those 22 samples are and where they are from.
     
  17. Sean

    Sean Senior Member

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    No argument there. I am not saying they are handling it perfectly. Just saying that there is no need to waste precious time and energy (and frankly, credibility) pursuing conspiracy theories to try to explain this situation.
     
  18. bullybeef

    bullybeef Senior Member

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  19. Marco

    Marco Old blackguard

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    I appreciate that we can't be sure of the contents of either of the 'embargoed' papers, but from the littlle we know or suspect, I find it difficult to believe that CDC were intending to go to press with a paper that basically stated that they found NO evidence of XMRV in either CFS patients, healthy controls, known positives and known negatives.

    First off CDC cannot try to pretend that XMRV doesn't exist. That genie is well and truly out of the bottle and isn't going back in.

    The question then comes down to issues of prevalence, transmission, disease association and causality.

    I'm not convinced that the expected CDC findings are consistent with any anti-ME/CFS agenda. Details have already been posted of Switzer's earlier findings of no active XMRV in protate cancer cases. It has also been noted that this is CDC's retrovirology branch not the CFS team. Conclusively, finding XMRV in equal proportions of PWME/CFS and healthy controls would be more consistent with a CFS related agenda.

    Infection has already been shown by the 'monkey studies' so the isssue then becomes one of prevalence.

    I could easily understand that CDC might be a little embarassed that they missed a new human retrovirus that is now being found in high percentages of the general population, so it would suit their purposes to be finding low numbers. But not finding even known positives clearly makes it an issue of methodology.

    I would assume that the CDC team working on this would as a matter of course keep themselves abreast of developments in the field. It has already been stated that the CDC study started relatively early, but if people on this forum are able to source information that suggests the virus is hard to find and that you need to be looking in the right place, you would expect CDC to be aware of this also.

    So, being in possession of a paper which clearly states that you found no evidence of XMRV in patients and healthy controls, plus were unable to detect even known positives, and that evidence was emerging that you needed to use specific methods and look in particular places, would YOU submit the paper for publication?

    If it were me, at the very least, I'd report the study findings, but with a very large caveat that the findings need to be considered in light of methodological issues which emerged after the study started. At least that would allow CDC to retain some credibility.

    And then you find out that NIH and FDA teams have both independently found XMRV in even higher proportions of the general population than previously reported.


    Perhaps the delay is to allow the CDC team time to add these caveats?
     
  20. taniaaust1

    taniaaust1

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    Thanks. I loved your post, gave me a different view of looking at it.
     

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