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CDC replication study delayed in order to prepare a press release?!

Discussion in 'XMRV Research and Replication Studies' started by awol, May 28, 2010.

  1. ixchelkali

    ixchelkali Senior Member

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    I share your distrust. But if the CDC found nothing and then heard rumors that some prestigious researchers had found something, they might hold back and just keep mum. As you said, for damage control. I'd like to think that hearing nothing from the CDC is probably good news for us.

    I don't think the CDC really likes to confirm discoveries, they like to be the ones to make them. And it is possible that long-standing inter-agency rivalry could mean that they especially wouldn't want to confirm a discovery made, in part, by the NCI.

    You know, I once held the CDC in very high regard. Their whole behavior toward "CFS" has been very disillusioning. <sigh> These people are not our friends.
  2. Mark

    Mark Acting CEO

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    Nice guess Rebecca, that's confirmed:
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Mark, I have no problem with rumors being posted by anonymous people posting on this message board. But I think Cort and others who publish information as an approved blog of the Phoenix Rising Web site needs to have higher standards.

    Number one, you know the person putting out the info, by their real name.
    Number two, the person putting it out got their information from a first hand source, possibly two. doesn't mean they have to name the source, but should not put out second hand and should give some general information of the source, such as "a person working with the XMRV task force" or something like that.
    Number three, if it is big news, then may need two first hand sources.

    I say this to protect the legitimacy and credibility of Cort and the Phoenix Rising Web site. We all know to take an anonymous post on a message board with a grain of salt. But it's different for someone who conducts interviews and writes articles.

    You will notice the other blogger, when referring to the information she had, attributed to a government worker.

    Tina
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    And Mark, I think you are attributing regular news with medical research publication of studies. I have learned that the two are very different.

    Remember, WPI kept quiet until Science Journal published their study. Didn't even make a press release the day before. This is the standard. Medical journals are where information is put out in a credible manner, when it comes to medical study news.

    Also, I can't imagine with the whole medical community knowing CDC is doing a study, that they wouldn't publish. I mean, we are waiting, but so are many others on both sides of the Atlantic, even the whole world. I mean, for their own credibility, they can't do a study on such a significant public health concern and then just say, "Naahh, I think we'll just keep this to ourselves."

    I remember reading in Osler's Web that they put out their information on the study on Incline Village outbreak because everyone was expecting it and tax payer money was used. And they eventually published their results of the search for the DeFreitas virus. Going against her finding.

    I agree they would prefer to do the finding. But if they don't chime in to confirm, then they will lose all credibility on anything on XMRV or CFS in the future.

    I suspect that they are either lining up a plan to avoid panic (like make sure testing is in place first) or they are making very, very sure before they put something out. And if there is another government agency with different results, they may be waiting and working out the differences.

    I think this virus is just very hard to find. And if the Japanese and Germans and some other Americans can find it, they sure don't want to put out a study saying they can't find it unless they are very, very, very sure.

    Tina
  5. Mark

    Mark Acting CEO

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    Thanks for all those points Tina. I value the realistic perspective you bring to my rantings very highly, thanks for doing so again. :Retro smile:

    I totally agree with this point you've made: XMRV is obviously hard to find and the fact that the exact same discrepancies exist with the prostate cancer studies (where there's no psych axe to grind nor any obvious political motives) points clearly to that. And the most obvious interpretation of the differences between, on the one hand, people who are finding it, with consistent estimates of the background levels, and on the other, people who find none at all...well surely it's by far most likely that it's simply hard to find and doesn't behave quite as expected.

    And yes, assuming it all pans out to be true, nobody wants to be identified as one of the ones who couldn't find it. I love that Wessely and his team are already painted into that corner. :Retro smile:

    Another point is: assuming that the explanation is indeed that it's hard to find, and there is something peculiar about this aspect of retrovirology that explains the discrepancies and the failures to find...then in that case, it makes it pretty feasible that DeFreitas really did find something critical that others failed to replicate. If that ultimately turns out to be true, and DeFreitas' findings are eventually vindicated as relevant and significant (I'm expecting so) then what a disturbing narrative that creates. I know you've run the implications of that one through: the news story is: this was actually found 25 years ago but the research was discredited and the whole thing was swept under the carpet and not followed up. Osler's Web would hit the bestseller lists! And can you imagine the public reaction when they get wind of that story? Persuading them that this CDC failure was not a conspiracy...well, maybe they should call you up for that job! :D

    Sidetrack: I just read the "blood feud" blog and it reminded me of a detail that seems to have rather got lost along the way: in Kerr's study, they found 26 people with "XMRV antibodies" (which may have been antibodies to something else they think) and all of them were from controls - one specific group of controls I think. Intriguing finding which needs explaining. I got the impression at the time they were treating it as a puzzling anomaly, and on balance couldn't figure it out and were disregarding it. I hope that massive clue to something-or-other doesn't get lost along the way...possible explanations I can see are (a) there was something crucial about the way the blood was drawn or handled in those samples that meant the tests actually worked, or (b) they identified a cluster of a localised retroviral infection and some retroviruses turn out to be geographically clustered. I read earlier today that some retroviruses are know to exhibit considerable geographic clustering, which may feasibly explain why Wessely et al may have been more reasonable than we thought in hoping XMRV isn't in the UK. But if they really are geographically clustered, there would be a big question how that happens, how that's possible, how they are transmitted if so. My money, as so often, is on toxic mold...
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Job working for CDC in public relations in CFS. Now that would be ironic. I would be glad to take the job, if I had the energy. But I suspect they would not want me. The problem I would have is I would tell the truth. Sure, I would put a positive spin on it, but I would still admit to failings.

    Many in PR don't realize that the problem is not what you did wrong or the mistake, the problem is you don't own up to it or you try to cover it up. Just ask Bill Clinton. The problem is always the cover up.

    Tina
  7. Cort

    Cort Phoenix Rising Founder

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    Thanks Tina I appreciate your comments. We (I) obviously made a mistake with that. First I had no idea it would generate so much discussion (altho in retrospect I don't know why I didn't realize that). Secondly two people believed a press conference was on the way. One of them had a date with a reporter to discuss the implications of it on that Monday. I apologize for all the ruckus it raised. It was a learning experience indeed - all of this, really, is a learning experience for me. Needless to say I will be much more careful next time :).
  8. Cort

    Cort Phoenix Rising Founder

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    That's a good scenario Ixchelli The CDC is tied in with the DHHS task force that is basically creating a validated test for XMRV. We know the early tests are not good enough. Now, if the DHHS was not finding anything - then the CDC might feel good about announcing a negative result - but if they are then they would definitely not announce their results and they would be retesting their samples. My sense is that the different agencies are very competitive as well!
  9. Rrrr

    Rrrr Senior Member

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    done and done. i emailed him.
  10. Rrrr

    Rrrr Senior Member

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    I agree, and I just started a new thread with this below idea, on this forum, in the advocacy section:

    Holding a Multi-City Demonstration: A Sleep-In at Major Intersections Around the US, and at CDC and NIH parking lot exits.
    ______

    If I were not too sick to organize this, and not too wrapped up in my own daily survival, this is the demonstration i'd like to pull off

    i think we could make a big stink with this plan and get a lot of media attention.

    We only need 5-10 people per city: Boston, NYC, San Fran, Wash DC, Chicago AND the CDC and NIH parking lot exits.

    On the same day, in each city, at evening rush hour, we do a sit in (lie in) at a major intersection, all of us wearing our nightgowns and pajamas and we bring sleeping bags and pillows and lie down. How could the news media resist this? We don't move until the threat of arrest is real--then we move. We have on hand the Disability Law Centers and other such institutions ready to assist us legally if any of us do get arrested.

    We have signs and hand outs that say "The next HIV epidemic is happening now. US Gov't: Do XMRV studies now! Fund CFS research now!"

    All we need are 5-10 people per city, per major intersection.

    Of course we call the media in advance. They shoot/film the whole thing and it makes it on the 11 pm news. But we also shoot it ourselves, too, and post on YouTube.

    rrrr
  11. VillageLife

    VillageLife Senior Member

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    I honestly think we won't have a cover up, there are to many good hearted people working on this!
  12. V99

    V99 *****

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    If the CDC cannot find it, and another group can, then perhaps they are retesting using the Science methods.
  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    News is out the NIH and FDA find XMRV!!!!!!!!!!!!!!!!!!!!!

    From Facebook:

    Whittemore Peterson Institute Dr. Mikovits and Dr. Ruscetti response to comments on Science paper

    http://www.sciencemag.org/cgi/content/full/328/5980/825-d

    Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'

    I set up a poll on how many people are on Facebook, we have a good chance of raising $250,000 for PANDORA!

    Join up if you have the energy and let's help ourselves raise some money for more funding and resources!
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I don't really understand how these things work, so perhaps my question here is naive. If government authorities (and indeed other researchers too) can decide which scientific research they wish to publish and which they do not, in secret, does that make a complete mockery of the supposedly neutral and objective nature of the scientific process? Does it undermine the whole basis for trust in Science to deliver us the truth? Or is that just my imagination?

    Perhaps you are a little naive. Yes, on the Science questions. Perhaps I am a conspiracy theorist, but reading this reminds me of Global Warming, sorry Climate Change or whatever they call this now! I used to believe in it because I would see it all the time in the media. Makes sense right, even if the message is wrong, people will start to believe it, if you repeat it often enough!

    I think it is about money and control! American money going to the rest of the 3rd world etc.. and more gov't control over our lives! Look where that has gotten us? Years and years of suffering, sorry I would rather die than give up my Freedom! Even with the XMRV discovery, I would give up my life like many brave souls before me!

    Freedom is not Free! and Live Free or Die is not just the motto of NH, (one of the original 13 colonies) it's a state of mind! Look it up.

    Proud 1st Generation American!

    I am off of my Soap box now, ignore if you wish, you too CDC!
  15. Mark

    Mark Acting CEO

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    We're in grave danger of wandering off topic now but I guess I may have started it...moderators be on hand to moderate me as required please...:Retro smile:

    Climate Change (then called Global Warming) was the preserve of a few mad hippies like me 25 years ago, it has been a long, slow, painful battle to get it scientifically established. Just like ME/CFS actually - now we too are not quite so crazy as was once assumed. But as soon as you start to win the battle for understanding, in step the controllers of information and the financial interests to finally accept the reality in a road to damascus conversion and make out like they discovered the whole thing, and then twist it to suit their own purposes - ignoring all the advice and experience of people who've been exploring solutions to the problem for 25 years, and instead choosing to adapt to the reality of climate change in a way designed to suit their own purposes of control and to maintain the existing power structures.

    Be warned: now we have won our biggest battles they will start to do the same thing to us: they will prefer expensive ongoing treatments, preferably ones we have to take every day for the rest of our lives, in preference to more natural and longlasting solutions which they will continue to ridicule, and they'll prioritise vaccines for everyone else over treatments for us. Once everybody learns of XMRV and the measures they will take to respond to it, people will start to say the whole XMRV thing was dreamt up in order to control us with the new wave of vaccines.

    Climate change is real. XMRV is real. How our governments respond to both problems is unreal - yes you're right, it is about maintaining control, that's what they do best, and I can see why the way they are preparing to use climate change right now would make you suspicious.

    I very much doubt whether anybody's really planning to reverse the flow of resources from the "3rd world" to America any time soon though, I don't think you need to worry too much about that, lovely idea though it is. The people of Equatorial Guinea, for example, won't be holding their breath for the US oil companies to decide that burning more oil is such a bad idea they ought to shut up shop and stop stealing that poverty-stricken nation's greatest natural resource - with the kind permission of the diamond-encrusted family they bankroll to rule the bare-footed population with a rod of iron. Neither will the rest of the population of Africa be laughing all the way to the bank.

    You seem to me to have it all half-right: sure, the powers that be only want to dominate, but they can dominate by manipulating the response to true science just as effectively as by suppressing it. You can't assume it isn't true just because they say it - all that means is that they can't deny it any more and have found a way to make it suit their purpose.

    Somebody had better suggest a more appropriate area of the forums for this subject though, if we're going to continue; it's way off topic and I know I'm not helping there...sorry...
  16. dsdmom

    dsdmom Senior Member

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    Mark, you make some very good points. Very thoughtful, in fact. It is sad to say that your thoughts probably have some merit as far as expensive treatments that have to be taken long term.
  17. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > they will prefer expensive ongoing treatments, preferably ones we have to take every day for the rest of our lives, in preference to more natural and longlasting solutions which they will continue to ridicule

    I bet you can't name one example of this having ever taken place, other than marijuana being under-used as an anti-nauseant and appetite stimulant. It's certainly not totally unused, and anyway that's one single affair, out of thousands of human ailments and thousands of medications. Not to mention that marijuana can rather commonly prove to be strongly habit-forming (regardless of the lack of a significant withdrawal syndrome). As for hormone treatments, one can get the bio-identical substances if one wants them. And I suspect there are very good reasons why some think certain non-bio-identical molecules are superior.

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