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Article: XMRV at the Fed: Conspiracy or Confusion?

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 10, 2010.

  1. Marco

    Marco Old blackguard

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    I always appreciate your level headedness Cort but I fear in this case you're being a little too generous.

    Do CDC believe they are right?

    Well firstly I assume they believe that XMRV exists, I doubt even CDC would try to deny that.

    Do they believe that XMRV is unlikely to be found in CFS patients and their cohort in particular? Bearing in mind that we started with ME, a neuroimmune disease, and the CDC empirical criteria for CFS purposefully exclude those with any immune or neurological findings, this seems highly likely.

    Which brings us to the matter or prevalence in the general population. Do they believe that the prevalence rate in the general population is so vanishingly small that they found no trace of it in 100 plus samples? Even the 0.5% rate quoted by Vernon had a 50% chance of being detected. They could argue the geographic case, but they must be aware that the WPI cohort were geographically spread.

    Do they believe the WPI team, the positive prostate studies and Alter were all wrong and that the positive samples supplied to them were false positives?

    I'm afraid that's too much self belief for me.

    As for the fact that XMRV was unknown until a few years ago, this is no excuse. CDC are at fault, not for not finding the bug, but for not even looking for it. Perhaps they did genuinely look for DeFreita's virus and couldn't at the time find it. What they could have done was accept the physiological findings and carry on looking. Instead they disregarded the pathology and instead pushed a psychosomatic model and diluted the disease description which almost guaranteed that if CDC couldn't find the cause, neither could anyone else.

    Perhaps CDC's reputation as the nation's leading bug hunter was sufficient motivation to bury ME/CFS. After all, if they couldn't find this bug, why trust them with AIDS, Ebola etc.

    Switzer et al might have believed in their study (which assumes that CDC virology are completely ringfenced from the CFS people) but Reeves certainly didn't.
     
  2. Sasha

    Sasha Fine, thank you

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    Holy sh*t! What a story. Great research, ix.

    Doesn't this sort of thing just show the absolute death of investigative reporting in recent years?
     
  3. Sasha

    Sasha Fine, thank you

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    Sorry if this has been answered elsewhere and it's off-topic but does anyone know where Vernon gets such a low figure for background prevalence of XMRV? I saw her talking about 0.1% (I think) in her slamming of the CDC study. I thought that the WPI study got 4%, Japanese studies 2%, that sort of ballpark.
     
  4. dotdot

    dotdot

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    What happened to Peter Buxton?
     
  5. dotdot

    dotdot

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    Maybe the CDC are bolstering their psychiatric definition of CFS, knowing that the Canadian definition is going to be adopted very soon - courtesy of the WPI work.
    They're preparing for that split, and they're just trying to make sure their CFS-lite/ psychiatric definition stands strongly in opposition to the infectious disease ME/CFS/blah blah blah is rapidly revealing itself to be.

    The chaos, as usual, is about the long-term failure to define the disease correctly. The end play of the 'definition mess' is in progress, and that's what we're watching now.
     
  6. Sean

    Sean Senior Member

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    They are still going to have to explain why they so drastically altered the original definition (Holmes 1988), which despite its faults is still closer to ME (as defined by Ramsay) than it is to the Reeves 2005 joke. They can't get around that.
     
  7. markmc20001

    markmc20001 Guest

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    how to stuff a cat back in the bag

    I've been trying to keep my mouth shut, but here is my blunt opinion.

    I'm on board with muffin. There is an effort to keep this covered up. The reason is due to economic reasons. What happens when 7% or more people have this sucker?(I think much much more) What happens with health insurance, blood testing, disability insurance, blood transfusions, economic activity, plane travel, global trade, social interaction, the stock market...... the list goes on. They are trying to keep the wheels on the economy as it is (I think XMRV is greatly repsonsible for the current weak economic state as it is) This is one dang ugly cat to keep in the bag!

    The kicker is many people don't get CFS when they get XMRV. they get some other illness that makes them slow down, but still function. LIke prostate cancer, mental illness or whatever.

    They know XMRV is real..... Want proof it is real?? watch the lastest Charlie Rose interview series nine on the brain..... ONe scientist lets it slip out. He basically says that people have a genetic predisposition to an illness, and then with an infection and toxins or stress the Genentic information changes causing illness. IN this case The scientist describes it as causing "depression", "psychosis", "bipolar disorder". BUt it is the same mechanism....

    CAt is out of the bag, they are just floundering on how to release the information on the public. The cdc probably has a policy in place for problems like XMRV, and how to deal with them, and it scares the shit of of them. Reeves knows this, and that's how he anticipated not finding XMRV to begin with.
     
  8. V99

    V99 *****

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    A conspiracy to not investigate a disease, is one way to look at it.
     
  9. boomer

    boomer Senior Member

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    That's right V99. They went out of their way not to investigate this disease - and all countries seemed joined at the hip on that policy.
     
  10. anciendaze

    anciendaze Senior Member

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    I think you ought to allow them an alternative to conspiracy -- incompetence. It is too easy to defeat charges of conspiracy. The confusion Cort describes is very real. The question which should now be addressed is the source of that confusion.

    Scarcely anything about a confusing illness and difficult diagnostic problem has become clearer after involvement of the CDC group tasked with investigation. This is not a fundamental flaw in either the CDC or the EIS system. They did a competent investigation of an outbreak of "Punta Gorda flu" in 1956, and concluded there was likely to be an infectious agent they lacked the ability to detect. One of the investigators and authors of the resulting paper was Donald Henderson, who was later Dean of the Bloomberg School of Public Health at Johns Hopkins. His primary claim to fame is his role in the eradication of smallpox. At last report, he still believed there was a real physical cause behind that outbreak he saw as a young EIS investigator. The flaw is a kind of organizational culture which appeared in the 1980s.

    Now, we need to go back and check on who contributed to understanding the problem, and who contributed only confusion. Science always proceeds from uncertainty and confusion to understanding, in those cases where it achieves understanding. This is the point where you can distinguish scientists from bureaucrats who know what result the management prefers. Your opponents may actually prefer to be called evil scientists, to being characterized as mere ciphers trading on the reputation of their organization.
     
  11. Mark

    Mark Acting CEO

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    Hanlon's Razor invites us to never attribute to malice that which can be explained by stupidity.

    It's generally a good rule with humans, dumb as we are.

    The problem here is that we are in a situation where the stupidity is so spectacular that it becomes extremely hard to imagine that world-famous professors and top researchers for the government can really be that stupid.

    However, on the other hand, I keep coming back to the reactions of friends and family to the concept of "psychosomatic" illness, and the knowledge that most people consider that to be a reasonable theory and don't understand why it's so contentious. So actually we all know from direct experience that lots and lots and lots of intelligent people really canbe that stupid, and stubbornly remain so no matter what we say or do.

    Overall, I would say that I can adequately explain the blind spots and failure to be objective and investigate the condition, based on the idea that one's assumptions influence one's science. If one assumes something isn't real, one has less chance of finding it. If lots of people agree it might not be real, it's easier to believe it isn't real. If the most respected authorities agree, and after this has been going on for some years, it's easy to see how people become hypnotised by the psychosomatic concept. Even the proponents themselves could be unwittingly deceiving themselves.

    Therefore I don't think it's necessary to speak of "conspiracy" in the sense that the word is most commonly used: an organised and deliberate attempt to suppress known information. However, the problem is also linguistic, because we lack a word to describe the way the "conspiracy" works. The closest that might come to it might be something like "collective insanity" or a "shared delusion" - or at very least, a set of shared assumptions and prejudices.

    And having said all that, there remains a family of perfectly plausible - although outrageous - conspiracy theories that could well be true. It is possible (for example) that a small group of people became aware some decades ago that certain vaccines are associated with conditions including ME, and that those people had some criminal liability and have therefore been covering up this incident ever since. It's even possible that such people are now dead but that the steps they took to discredit and obfuscate the research have survived even after they have left the scene. All such possibilities are imaginable, they are possible, they can't be rationally ruled out.

    But there's an interesting point where the circle completes itself here. The solution to this question "Conspiracy or Incompetence" is to not allow the question: to make a decision that this is a question that cannot and should not be admitted. Because what one is trying to do here is look inside the mind of Dr Wessely, and of Dr Reeves, and of all these others, and attempt to guess whether they are evil or misguided/stupid. It's an exercise doomed to failure, we cannot know their motivations. All we can do is examine their actions and comment based on those.

    I hope it's clear that the same pattern applies to the psychosomatic theory. Attempting to look inside someone's mind and determine whether something in there is making them ill, is also an example of the sort of unanswerable question one should not ask. In religious terms, only god can judge these questions. Logically, we cannot know what is in someone else's mind. We can only ever speculate.

    So when we tie ourselves in knots trying to figure out if this psychiatrist is a genuine sadist or just plain wrong, we are just reflecting back what the psychologist did when he tried to figure out whether we are really sick or just imagining it. We are responding to that original idea, when we worry about "conspiracy vs confusion". If we ever get lost in these sort of arguments, it's helpful to remind ourselves that we are asking unanswerable questions, and that we will get much further by exploring and analysing simply the facts of what has happened and what is happening. It will always be possible to interpret those facts two ways, depending on our guesses about what's inside the protagonists' heads, but the important matter is: what happened, who did what? Whichever way you slice it, lots and lots of people involved have a lot to answer for...
     
  12. xrayspex

    xrayspex Senior Member

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    Fascinating, all of it. First of all, re: "Originally Posted by ixchelkali: And where is Dr David Sencer now? He’s retired and serving on –wait for it—ethics committees at Emory University, and teaching freshman medical students"------Emory Univ, isn't that the one that does the bogus research or recs treatment for cfs based on meditation or the mindbody stuff, connected to the cdc, the name rings a bell. What is up with that connection then??

    Secondly, regarding what some have said in this thread about govmt being concerned how the xmrv discovery is going to hit the US with its compromised economy etc, let me get this straight, are some of you guys saying that the govmt and citizens may freak to realize its as easy to get as a common flu or cold but dif is that it turns on certain genes in some people and thus you could get cancer or cfs etc So when people understand that and that there really isn't a way to completely protect against that without living in a bubble......it makes me think of that other current neuroscientist, James Fallon, that I heard on NPR recently, a geneticist who was blown away to discover that per MRI he had the same kind of brain as the psychopaths he studies and he realized, not being an apparent murderer, a good guy, that one's environment must interact with genes to determine what gets expressed in one's future behavior, good childhood can count for a lot. So now though I am thinking the third ingredient to happy healthy life is avoiding certain infections/virus that might activate genes you don't want activated......all this reminds me of the "boys from brazil" but I digress too much.

    But if xmrv is easily transmitted, houston we do have a problem. I could see the govmt wanting to conceal that, I mean you could get cancer 20 years from now cus of the clerk who sneezes on your money at the grocery store that one time??

    I saw Dr Cheney once and he said he believed his heart problems in the new millenium were likely his expression of being exposed to the cfids virus, whatever it is (this was a few years ago) and he thought he could remember the moment he was exposed in the 80s, feeling weak for a moment or something like getting sick and faltering in step and then not coming down with it. It makes me wonder if the time I flew to Arizona from midwest for first time in 86 if got something on the plane, I felt strange anxiety on that flight normally don't have and then as soon as hit PHoenix was sick, figured it was allergies, although I wasn't an allergic type back then, it passed with a couple days and had fun out dancing etc but then when back home strange fluish stuff returned for a week with a new sharp pain in spine, it all passed, except for new intermittent pain that I remedied with lifting weights and I was fine for a couple years til had surgery then the floodgates opened......or was it the vax as child in early 60s? Does anyone remember anything weird back then? One of my earliest memories is not being able to move my legs for a couple days and being in pain like flu after booster but it must have passed quickly and parents never mentioned it later, did get recurring mono as teen though. So much to figure out, what was the tipping point? These are the sorts of quandries that will play in people's minds once they realize the mechanism to illness, if indeed it is that easily transmissable. But also isn't it true that we don't know if xmrv causes the sickness or is just associated when its there?
     
  13. V99

    V99 *****

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    Yes, they don't know if XMRV causes disease yet, but if most, if not all of us have it, then whats your guess? If it is just an association, that is still really important too.
     
  14. jeffrez

    jeffrez Senior Member

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    Just an editorial point. "The Fed" usually is used to refer to the Federal Reserve. While occasionally it might be intended to refer to the federal government in general, most often - especially these days with so much economic upheaval - it's used to refer to the banking system. It might be better to change the title to "XMRV at HHS," or even "XMRV at the CDC," just to avoid that possible confusion for people who might show up from search engines thinking they were going to read an article about a new financial policy or something like that from the Fed (Federal Reserve). ;-)
     
  15. LaurelW

    LaurelW Senior Member

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    Sorry, Cort, I'm not buying it. While I see that you are trying to be even-handed and objective, I think you are being too generous to the CDC. I think one of the biggest problems in our society, and of course this includes scientists, is that once people make up their minds about something, they agree with positive evidence and ignore negative evidence and find some excuse why it's not valid.

    This is especially true of someone who has a vested interest, such as a scientist who has already published papers on the subject. It's like going back to a convicted person and saying, "Would you like to change what you said in the original trial?" and the person says, "do you want me to perjure myself now, or back then?" People are very afraid of being wrong, and they are highly invested in protecting their careers. This leads to a lack of objectivity--narrow-mindedness and tunnel vision prevail.

    In Asian societies, saving face is a very, very big deal. I would argue that it's not that less of a big deal in the west. Just think about the way China tried to cover up SARS, leading to a bigger outbreak and the country's leaders getting egg on their face. Their coverup just made them look stupid to the rest of the world. They must have realized this, because the H1N1 was handled completely differently.

    What I'm waiting for is for the Reeves and Wesselys to finally realize that the more they stick to and tout their old theories and treatments, the more idiotic they are going to look for not being open-minded enough to change course when the evidence turned against them. That's what defines a good scientist--objectivity.

    It's like trying to keep covering up lies with bigger and bigger lies. It would have been better all along to just fess up when it was a little white lie and take your lumps.
    :oops:
     
  16. glenp

    glenp "and this too shall pass"

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    Be their death not in vain

    tHANK YOU FOR POSTING THIS INCH

     
  17. Cort

    Cort Phoenix Rising Founder

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    I believe this is the key 'conspiracy' over the years - the decision not to investigate CFS; that is the big, big problem in my opinion. The conspiracy of silence...what is that quote - all that is needed for evil to prosper is for good people NOT to step forward. I think its clear that very few people in the federal government have stepped forward for us.

    Dr. Lee did early on but I can't think of anyone who had done so in a really significant manner and that includes Harry Reid. I know he's a friend of the Whittemores and he's aided the CAA at times but when the NIH is still spending $4 or $5million dollars on a year on a disease that effects a million people in the US - nobody has clearly done nearly enough.
     
  18. Cort

    Cort Phoenix Rising Founder

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    I think that's very possible; they drew a real line there - the almost universal adoption (apparently) by CFS researchers of the CCC is pushing them to make a stand. Actually that should only benefit us, I would think - we need to have someone break this disorder up. If they can define their subset and the CCC can define another subset - so much the better.
     
  19. Cort

    Cort Phoenix Rising Founder

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    I agree with you that face-saving is a very big motive and it very well could apply to Reeves and Wessely and Kuppeveld - they all have a strong vested interest in not finding XMRV. (On the other hand Kerr, Huber and Joliceur all had a strong vested interest in finding it). The HIV/AIDS group at the CDC doesn't, however, fit into this scenario for me. Yes, Heineine is there but I think a counter-motivation to actually find a retrovirus they can work on study would be stronger for them. There is also the fact that this really is a new virus - one that no one can be blamed, really, for not finding in CFS. Plus I think the truth really will out eventually giving most groups a real incentive to attempt to find it (rather than, in hindsight, protraying how strongly their vested interest is).

    I guess I'm relying on what I think is the importance of rational self interest - something that you pointed out doesn't always apply. :Retro redface:
     
  20. Cort

    Cort Phoenix Rising Founder

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    The head of the CDC, Brian Mahy, as I recall, stepped down as a result of the accounting scandal regarding CFS funds - we did snare a pretty fish that time, if memory serves me right - so people can - at least at times - get their just due. I'm certainly not saying that it happens all the time. It would be fascinating to learn why Reeves was pushed out after so many years at the helm....I wonder if we'll ever know.
     

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