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XMRV Replication Studies

Discussion in 'XMRV Research and Replication Studies' started by Cort, Dec 5, 2009.

  1. CBS

    CBS Senior Member

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    I don't know!

    To all the doctors, psychiatrists, and especially employees of the CDC (are you listening Bil Reeves?), repeat after me:

    “I don’t Know”
    “I don’t know”
    “I don’t know”

    Now doesn’t that feel better than having to keep up the charade?
     
  2. Koan

    Koan Be the change.

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    :D

    It would make them feel better! It really would.
     
  3. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    I dont know is right enough, for them. Those who want to investigate psychobabble dont bother me too terribly, morally or emotionally or whatever. But if they are "certain" they certainly do. If they opine without being able to address physiogenic theories at a high level, they certainly do.
     
  4. CBS

    CBS Senior Member

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    I don't know

    ... and I promise to stop making sh!t up!

    How's that?
     
  5. Koan

    Koan Be the change.

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    I don't know.



    :D
     
  6. spit

    spit Senior Member

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    This became a really awesome discussion. I wish I were feeling smart enough at the moment to say much that would really add to it.

    I find this actually quite a common problem among scientists I have known. Not all of them, surely, but many. Science itself is a philosophy that works really, really well within its particular framework, tells us things about the observable, repeatable world that we would never figure out by other means or methods. But if you step outside of that framework and still try to apply its logic, it can all go to hell really fast, suddenly you're saying things that may seem to have support on the surface but that contain so many underlying assumptions and faulty pieces of logic that you're screwed. That's fine, of course -- it happens. It's that it happens and so many people don't recognize it happening, and instead hold on to it as "scientific", that's really disturbing.

    Pain is a perception. It doesn't exist otherwise. That's true whether it's triggered from an obvious outside physical source or no. So saying that somebody has the perception of pain, implying that it isn't "real" pain, is either a totally sloppy way of saying a physical stimulus that we've generally associated with the pain response is absent, or it's a total misunderstanding of perception itself. If it's the former, that doesn't mean much -- we don't see a physical, outside source of the pain in many neurological diseases. Pain is triggering "inappropriately", not in response to an outside stimulus, but that doesn't make it not pain, and it doesn't make it psychogenic, at least any moreso than any perception is psychogenic. If it's the latter, it's frustrating that somebody who obviously doesn't understand perception is so involved in research that inherently involves disturbances in perception.

    "I don't know" is the most valuable phrase any scientist or doctor can ever learn, I think. Knowing what can and can't be known for sure is important, and understanding what the data isn't telling you is every bit as important as seeing clearly what it is telling you. In fact, if you don't have an understanding of both, you don't have an understanding of either.
     
  7. Samuel

    Samuel Bedbound with NO DOCTOR

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    I am tempted to put this in my signature.
     
  8. Marylib

    Marylib Senior Member

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    Oh yeah

    Remember when they came out with Lyrica and all of a sudden fibromyalgia got legitimate?
     
  9. kurt

    kurt Senior Member

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    Ah, the old nature-nurture debate. The 'adaptive' mechanisms of the brain do indeed include a type of neural network learning process that by definition means that cognitive events can produce biological change in an organism. Therefore, the trigger of a 'brain restructuring event' may be purely psychological, emotional, or even a traumatic fantasy, but if that event persistes long enough, and if it occurs during critical periods in the brain's development ( there may be many throughout life), the neural connections that result may persist indefinitely. In other words, the brain is like a computer that can be re-wired every day, resulting in a hardware 'trace' of our thoughts and actions that will persist and indirectly influence how we are able to adapt and respond in the future. And if the adaptation is dysfunctional (auto-stressing the organism), immune functions can be seriously compromised, inviting in certain chronic infections that are stress-responsive (such as HHV).

    On the other hand, biological traumas can also trigger the brain's adaptive mechanisms. I particularly like the viewpoint on CFS put forward by Dr Bell, who views CFS as a post-infectious dysautonomia. In other words, an infection re-programs the neural network in a way that it can not longer keep HPA balance. Primarily this is probably the hypothalamus being re-wired by an overwhelming or dysfunctional immune response. The bug itself may be long gone, or may be held mostly in remission, but the dysautonomia remains because it has become hard-wired into the brain. And this dysautonomia leads to immune imbalances that invite new co-infections to take hold over time.

    So either situation, psychogenic or physiologic, could conceivably lead to dysautonomia, and perhaps in some cases both occur, which might create a strong vicious cycle. Certainly this happens with depression, it can clearly be caused by either psychological or physical factors, or both. And probably one common physical cause of depression is digestive dysbiosis and leaky gut which lowers serotonin production. But those can probably also be the result of prolonged trauma also, because the FF response lowers bloodflow to the gut. So we have this constant interplay between the cognitive and the physical elements of our being.

    Personally I expect that CFS and its close sibling illnesses will eventually take a unique place in medicine, I believe there is an entire category of dysautonomia illnesses, basically a hypothalamic dysfunction spectrum disorder. All the different ways to create dysautonomia, all the various ways to overwhelm the hypothalamus. And so treatments should be coordinated to address all the pathologies involved, somewhat holistic. This requires a lot of ongoing diagnostic work...
     
  10. perovyscus

    perovyscus

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    What options do scientists have if XMRV is not the causative agent? Since XMRV is now outside of our locus of control, I hope someone could speculate on other causes or treatments.

    -Fertilizing the ovaries of chinese hamsters and culturing them in the blood/CSF of CFIDS patients and healthy controls, then implanting them in utero. Screen for antibodies produced by the offspring and develop a chimeric autoantibody based on the results.

    -MRI of necks for spinal stenosis

    -Radioactive tracers compared to healthy controls for blood brain barrier crossing of norepinephrine/viruses.

    -Other things an institutional review board would not approve of.

    So Oppenheimer didn't make the bomb on his first try.
     
  11. jspotila

    jspotila Senior Member

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    There was a huge backlash, though. I remember seeing something in the NY Times about the "controversy" over whether fibromyalgia was a real illness within the rheumatologist community.
     
  12. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    NYC is a hot zone for psychoblather, and NYT has not always been our best friend.
    I am biased of course -- I dont like NYT anyway.
     
  13. gracenote

    gracenote All shall be well . . .

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    Drug Approved. Is Disease Real?

    Here is the article about fibromyalgia and Lyrica. Sounds familiar, doesn't it?

    http://www.nytimes.com/2008/01/14/health/14pain.html
     
  14. Dr. Yes

    Dr. Yes Shame on You

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    Back up on the 'psychogenic'...

    Kurt,

    What you are discussing is a hypothetical model in "neural networking", itself a field of theoretical modeling in what is called "cognitive science", which melds studies of computer science, linguistics, psychology, and neurobiology. Very few people who work in cognitive science have MDs, apart from psychiatrists, and in fact when I was studying in that area many didn't even have bachelor's degrees in biology. Although neural networking models have been employed in neuroscience, they remain strictly hypothetical at best. There is scant evidence as yet for the psychogenic causation of CNS dysfunction on the scale you have stated. Certainly there is no proof that psychological factors can cause observable CNS damage. There is however abundant proof that pathogens, toxins, and immune responses can cause CNS damage or merely persistent dysautonomia.

    Lloyd and others who seem at least tangentially connected with particular psychological researchers (White and Wessely in the UK, some of the Emory University psychiatrists in the US) are among the influential few who continue to research this model, which is growing in popularity with segments of the psychiatric community who have a very unscientific view of "somatization disorders"; see the many links in the DSM vs WHO thread. That in itself does not invalidate their research, but their frequently distorted presentations are problematic, to say the least. They have a tendency to overstate the scientific validity of their speculative model and to downplay or ignore the extensive research findings on physical causation of the phenomena they are studying.

    This allows for some very poor science, such as the all-too-hasty embrace of a 'holistic' model of illness centered conveniently on the HPA axis (one of the few CNS interfaces between multiple systems that has been closely studied and that is clearly involved in certain emotional responses); this model as you described it above will sound very familiar to many because it is the same one that has been employed to "explain" CFS since the advent of psychosomatic theories of CFS in the late 80's/early 90's. But giving "psychogenesis" the same or similar weight as organic causes of CNS dysregulation or damage is not scientifically sound at this point, especially not in ME/CFS studies, which have found quite the opposite: that ME/CFS patients have CNS pathology (hypoperfusion patterns, glucose metabolism, brainwave patterns, microglial activity, etc) that is distinct from that seen in known psychiatric conditions alone, even those frequently seen co-morbid with CFS.

    In a perfect world, scientific research would always be objective, but in reality it often is not. Different researchers bring their own biases, of course, but unfortunately many areas are also highly politicized - like CFS research. This gives us the additional burden of having to sift through research with almost the same caution we would bring to a historical discussion, instead of with the "face-value" approach that assumes researchers are operating objectively and giving us the whole picture. I have a background in neurobiology and have been consistently disturbed over the years by the flawed premises and lack of scientific rigor in the studies on 'psychobiology' of ME/CFS. My professors would have shot down most of these studies at the time they were first proposed.
     
  15. muffin

    muffin Senior Member

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    I am MOST interested in the Kerr study and how XMRV and our genes MAY be connected. I am concerned about the genetics of this disease because of siblings and a very smart 9 year old niece and a very smart 8 month old nephew. I would rather have 15 cancers, one after another, than see either of these beautiful kids live my life. So, Kerr and his gene study is critical to me.
     
  16. txfriend

    txfriend

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    Hi, Muffin...RE XMRV Replication Studies

    I'm with you, muffin...I have a 21 y.o. grdau with CFS since age 14. She just came to live with me as she was destitute, unable to care for herself, and with no health insurance or ability to fend for herself and fill out forms for SSDI/SSI. I'm doing that now and have good dr. for her. I also have one daughter with slight signs of CFS, and a briliant 12 y.o. grson that so far seem very well and healthy.

    Note, on co-cure today, they broadcast a replication study in the UK that found NO XMRV in any tested; however, they also used a group of their 'unwell' patients (who could have anything in the world, not real CFS/ME), and did not use the stringent methodology that the Wittemore Peterson Institute did, AND one of the so-called 'researchers' was of the psychobabble group, Dr. Simon Wesselly.
    Did you know the UK has a ban on M.E files of the government being opened until something like 2035 or later? Very interesting.

    The more I read and learn, the more I know good scientists are very interested in this new retrovirus and are studiously trying to replicate the pilot study in CFS. One can only wait and be patient and hope.
    Dr. Judy Milovits, the lead scientist on the pilot study, worked for 22 years at the National Cancer Institute, and knows her retroviruses very well, will be giving a video broadcast on Jan 22 about the further work taking place. Should be interesting.

    May I PM you with more info?

    Best to you, and the next generations to come!
     
  17. Hope123

    Hope123 Senior Member

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    I wanted to comment on the previous comments about Lloyd's XMRV studies in Australia.

    I read the 2006 paper and also the commentary related to it when it was released.

    One point that has stood out to me about the Dubbo study is that really, when it came down to it, they only had N=20-odd patients with CFS so it was a very small sample size. (10% of 200-odd patients developed CFS)

    Secondly, if XMRV studies are replicated in this group of 20, is it the right group? Lloyd was quoted as saying that 95% of the group had recovered by 1 year and 99% of the group by 2 years. This is entirely different from what is in the last few decades of CFS literature. Despite using different definitions of CFS, a 2005 Dutch review of prognosis still put the figure at less than 10% full recovery from a multitude of studies using a multitiude of definitions. An 80% discrepancy is too high. A colleague wrote Dr. Lloyd directly to confirm the figures and he did and reiterated it was "full recovery."
     
  18. nora_n

    nora_n

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    Redlabs Belgia is gonna do the very same tests that vipdx does, I heard rumors.
     
  19. Cort

    Cort Phoenix Rising Founder

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    Good point about Dr. Lloyd. That'll be interesting to see. He may be following a new cohort or not; if and he's not he has a very low sample size!
     
  20. gracenote

    gracenote All shall be well . . .

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    update on two studies

    Here's an update on two replication studies being done through Gordon Medical Associates.

    News from Gordon Medical Research
     

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