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FDA/NIH Paper will be published

Discussion in 'XMRV Research and Replication Studies' started by Mindy Kitei, Jul 9, 2010.

  1. SOC

    SOC Senior Member

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    That's gonna piss off my PCP who diagnosed me by CDC methods (tests they said needed to be done, and Fukuda (unrevised)). He has an almost religious belief in the CDC and used them as his one and only reference on ME/CFS, despite references I gave him to respected physicians.

    And you can bet I'm gonna take him to task for his failures with my family due to his dependence on the CDC information only.
     
  2. Sean

    Sean Senior Member

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    I don't believe they will get away with that. It is too sloppy and dishonest. They might have been able to up till now, but the game has changed completely, we now have serious big scientific guns on our side, aimed squarely at the CDC (among others).
     
  3. SOC

    SOC Senior Member

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    I think they very well could get away with it if the ME/CFS community doesn't insist that it be brought to light.

    As far as the vast majority of the world is concerned, the CDC are the experts on health issues. I suspect they're counting on that to get them through.

    I think we're all so furious about the way we've been treated by and because of the CDC that we won't let them get away with it, but it could happen if we don't convince the media to break the scandal.

    Edit: And they've probably PO'd Alter, PNAS, WPI of course, and probably a number of others, so they may not let CDC off the hook, either.
     
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well, it will depend a lot on the news media.

    Will it be reported as a brand new illness or the discovery of the cause of an illness that was misunderstood and neglected by government officials.

    New, or old?

    At some point, it will be a new illness because, as we are all assuming, it will get a new name. At some point, the focus will be on what they discover about this illness with a new name. And "CFS" will not be in the news, because there is nothing new. Although, maybe the prevalence will decrease.

    Here is an interesting topic, which direction will some of the doctors specializing in this go? Will some keep diagnosing as CFS if the person doesn't have the virus?

    Tina
     
  5. alex3619

    alex3619 Senior Member

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    Hi Bob,

    I too have had the suspicion that the two figures might link with a possible new virus. However, does anybody know for sure that the FDA and NIH data didn't derive two separate figures? One at three and the other at seven percent? I guess we will know in a few weeks if the rumours are true and the Alter paper is published then.

    Bye
    Alex

     
  6. SOC

    SOC Senior Member

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    I agree that we'll only know for sure when the paper is out, but it reads just like a statistical error band.

    As I recall, he was talking about the estimate of the percentage in the population at large, not the percentage in his specific sample.

    I'm pretty sure Sasha is right on the money.
     
  7. biophile

    biophile Places I'd rather be.

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  8. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    I agree, 3-7% sounds like a 95% confidence interval.
     
  9. anciendaze

    anciendaze Senior Member

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    Concerning those 3% to 7% estimates, we won't know exactly what this means until we have the published paper. Even then we will have a respected researcher's opinion, expressed in numbers, which will need to be supported or modified by much more work.

    Don't put too much confidence in numbers, especially when dealing with small samples and laboratory techniques that may still have systematic errors. Statistical confidence bounds are based on having systematic error identified and under control, so that you can use error distributions characterized by only two numbers: mean and variance. We are scarcely at that point. Our ignorance is such that we simply don't know what distributions are appropriate, and so use the least demanding.

    In most such instances, there are shortcomings of test assays. In this case, we have plenty of evidence that it is easy to get false negatives. As tests improve, this alone suggests percentages will rise. A second factor is that we are learning about when and where to look for this virus in human patients. Improvements here will have the same effect as improved sensitivity.

    Finally, we are at the early stages of identifying the particular subsets of the general population which show higher rates of incidence. Experience shows that having a better idea of these subsets gives you a much better chance of estimating overall rates of incidence from small samples, because you are less likely to overlook a small group which will dramatically change the general result.

    These arguments, taken together, strongly suggest later estimates of general incidence will be higher. This is highly troubling to officials trying to craft a response to a crisis. Even a 3% rate translates into about 10 million infected people in the U.S. A 7% figure would push the number over 20 million. If the factors mentioned above make even that conservative, we could be looking at 30 million.

    How you deal with an epidemic of lifelong infection of such proportions is a very good question. We need reliable tests implemented yesterday. We need to understand transmission. We need ways to stop or slow the spread. We need effective treatment options.

    This is a wicked problem to hand anyone, even without a legacy of mishandling.
     
  10. Sasha

    Sasha Fine, thank you

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    Hi Alex - I've seen Alter reported as saying the figure is between 3 and 7%. If it was two separate figures for XMRV prevalence from two separate substudies, then 3 and 7% are so disparate for something trying to measure the same thing (one nearly twice the other) that I don't think Alter would see them as accurate population estimates and wouldn't give them as upper and lower bounds of a range.

    I agree we'll have to wait for the paper to know for sure!
     
  11. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    3% and 7% aren't all that disparate. Depends on the sample size, of course. If the true prevalence for the whole country (or whole state or whatever) is 7%, then in a sample group even as large as 200 people, there is still around a 5% chance of finding a prevalence of 3% or lower within that group. It's akin to how, if you flip a coin only 5 times, it is not all that unusual to get all heads. Even if you flip it 20 times you will probably not get 50% heads, though the true prevalence of heads is of course exactly 50% in the long run.

    Possibly, Alter's sample of normals (or blood donors or whatever) has about 400 people. This would yield a 95% confidence interval of 5 +/- 2%, ie 3-7%.
     
  12. snowathlete

    snowathlete

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    Is this the paper for the study to try and confirm the XMRV stuff, that got stopped/postponed a while back?

    If it is, where should i be looking for news of its publication?

    Cheers
    Joel
     
  13. bullybeef

    bullybeef Senior Member

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    My understanding is, for drugs trials to come into play, association has to be proven, and agreed upon. Drugs trials will go towards proving causation. Could anyone expand on this for me?
     
  14. Bob

    Bob

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    Hi bullybeef...
    I might be wrong about this but my understanding is that anti-virals can help to prove the cause of a disease...
    If a group of patients are treated with anti-virals, and their viral load is successfully reduced, and there is a corresponding improvement in their symptoms, then this can be used as part of the evidence that the virus causes the disease.
     
  15. bullybeef

    bullybeef Senior Member

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    Thanks Bob, that's what I thought too. Which is why it is so important that association is proven, and agreed upon first, so researchers can move onto this next stage.
     
  16. Sean

    Sean Senior Member

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    I am not suggesting we should just sit back and expect it all to happen automatically. That has never been the way of the world. But I do suggest that the necessary preconditions for holding them accountable over this are just about all in place, and that we now have some very big guns on our side whom the CDC et al are not going to be able to dismiss.

    Things can change, and they can change very quickly in the right circumstances. I think those circumstances are just about upon us.
     
  17. Sean

    Sean Senior Member

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    Yes, successful therapy (based on a particular model) is good evidence in favour of that model. The more specific the model and therapy, the stronger the evidence.
     
  18. SOC

    SOC Senior Member

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    I think you are right. A few more pieces in place and things will change very quickly.
     
  19. busybee

    busybee Senior Member

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    Hi Joel

    Yes it is.

    As soon as it is published someone will post it on here.
     
  20. sensing progress

    sensing progress Senior Member

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    XMRV Buzz page is probably the easiest way to keep up with developments: http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx
     

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