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Any thoughts on this blog post about retrovirus and ME?

Discussion in 'General ME/CFS Discussion' started by anniekim, Mar 17, 2015.

  1. anniekim

    anniekim Senior Member

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    Last edited: Mar 17, 2015
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  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont fully get it either. If there was contamination then the controls wpuld also test alot higher. Actually both groups should be the same, one would think???

    Something isnt panning out right.
     
  3. alex3619

    alex3619 Senior Member

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    Which is what I said in 2009. Its hard to figure out what the problem is. However the Mikovits-Lipkin et. al. study had Mikovits unable to identify a retrovirus. Unless there is good evidence this idea will not gain any traction.

    The key question to me, which has been hinted at and not properly addressed I think, is how much reverse transcriptase can reliably be found in ME patients? None? Some? A lot? A lot in a subset? Etcetera. If there is no reverse transcriptase aside from a rare patient then the retrovirus idea is dead. If most of us have a load of reverse trascriptase then its very much alive.
     
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  4. alex3619

    alex3619 Senior Member

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    The ways controls and patient samples could show different levels of virus, if it were due to contamination, would be chance, different handling, different locations, etc. In other words, its possible, but would point to a problem in the methodology as well as contamination.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Dont forget ERV's, its still being researched by KDM through WPI??
    Still alot that hasnt been proved either way.
     
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  6. Hip

    Hip Senior Member

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    If ME/CFS were underpinned by a retrovirus, wouldn't those who inject street drugs show high rates of ME/CFS? The highest rates of HTLV-II in developed nations are found among injecting drug users. HIV and HTLV-I are also prevalent in injecting drug users, though as we know HIV and HTLV-I have other common routes of transmission, such as sexual transmission, and by breast feeding in the case of HTLV-I.

    Also, wouldn't the long term sexual partners of ME/CFS patients, when no condoms are used, also show high rates of ME/CFS? Such sexual partners would be exposed not only to the hypothesized retrovirus, but also to any respiratory virus like enterovirus associated with ME/CFS.

    I saw an answer to this question some years ago: one researcher pointed out that positive samples are often handled more than the control samples.
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I suppose when one looks at all the theories about cfs/me and tries to narrow it down, the main current theories is that the immune system goes whacky and we have some type of auto immune diseases.

    Its also theorized that B-cells maybe carrying some type of infection in some which could be a reason for responses to rituximab.

    The other is we have some type of underlying infection keeping the immune system down and we get different infections reactivating that generally only occur in immune suppressed people such as those on immune suppressive drugs for organ transplant, those on chemo or HIV, HTLV, that are generally recognised. The other possible infections we all know to well and maybe they could be different strains which are not being controlled by the immune system and causing immune exhaustion.

    Or the initial infection was strong enough to have left permanent damage to the brain/hypothalamus etc etc in a hit and run incident.

    It could be a combination of the above.

    But as has been said before, we are probably dealling with several diseases/subsets not just one. Problem is all the theories make sense.

    its definately not the case with everyone but there are examples of people getting sick after a sexual encounter or their partners have become ill as well as their children(maybe something genetic there), this leans more towards being several types of diseases.

    I guess its up to researchers to sort out who is who, but its not going to stop alot of individuals working with their doctors to work out their individual problems and maybe finding where they fit into the above groups?? Because alot of testing is ordinary at best for many of us, treatment trials are really the only way to know where we fit. Basically whats happening with rituximab trials now. Even if a treatment works, it might not really tell us where the problem is??
     
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  8. Hip

    Hip Senior Member

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    I did at one stage toy with the idea that the symptoms of ME/CFS might be due to chronic EBV or chronic enterovirus infection, but the factor that allows these chronic infections to exist in the first place was a hidden retrovirus. So this would be a dual virus model of ME/CFS. However, as mentioned, both viruses would likely transmit during unprotected sex, so sexual partners would be dropping like flies with ME/CFS.


    The variation on that theme that I like is the idea that the initial infection was strong enough to breach the blood-brain barrier and enter the brain, and once in the brain, it settled into a permanent chronic infection, giving rise to ME/CFS.

    There have unfortunately only been two brain autopsies of ME/CFS patients that looked for enteroviruses in the brain tissues. Both autopsies indeed found enterovirus infections in the brain, whereas in the brains of four controls that died by other conditions, no enterovirus infection was found. That's hardly reaching statistical significance, but the results do suggest the idea that ME/CFS may arise only if the virus enters and chronically infects the brain.

    Michael VanElzakker's theory of ME/CFS is on similar lines: that ME/CFS arises only if the virus enters and infects the vagus nerve.
     
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  9. barbc56

    barbc56 Senior Member

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    I'm also trying to remember.

    Weren't the cells kept in separate storage and some of the cells were spiked? There was also something about an open cooler which contained cells. I can't remember if the study was truely doubleblind.

    I will have to check the accuracy of the above. In some ways, it seems so long ago.

    I think the study by Lipkin gave us the definitive answer.

    I am puzzled that some are stuck on this theory but maybe I have missed something.

    Barb
     
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  10. Ecoclimber

    Ecoclimber Senior Member

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    Ok, Barb, I'll bite,

    Mikovits and Ruscetti failed to replicate their xmrv findings in their own blinded patient cohort during the Blood Working Group and failed to explain how plasmids magically got into patient samples, or why they lied about epigenetic modifiers.
    http://scienceblogs.com/erv/2014/03/21/xmrv-the-rats-are-trying-to-climb-out-of-the-sewer/

    http://scienceblogs.com/erv/2011/09/30/xmrv-and-chronic-fatigue-syndr-29/

    The conspiracy theorists should explain why Mikovits solicits the opinion of Gerwyn Morris, a former patient on PR, who claims during that time period to hold only a graduate degree in psychology unless he is posting comments on various websites, then his degree status, however changes. It fails to amaze me, that someone who does not even hold a doctorate in any field related to the sciences and scientific research, suddenly becomes the world's leading authority on retrovirology research within a matter of a couple of years. Someone who claimed to suffer from severe neurocognitive dysfunction affecting his writing and his ability to speak ( his own words) could disseminate, investigate, analyze and lecture on molecular biology, retrovirology, pathology, virology, cell biology and testing and research methodology without gracing the inside of any reasearch lab or conducting one research project concerning retroviruses while taking to task every world renown retrovirologists on their methodolgy. That is the conspiracy that should be looked into. Last time I checked, graduate degrees in psychology do not require a science backgound or coursework.

    Chronic Fatigue Syndrome Researcher Fired Amidst New Controversy

    As to the statement of how Mikovits magically transformed Xenotropic murine leukemia viruses, WPI slide, into gammaretroviruses, Ottawa slide, when the xmrv replication didn't pan out, I and Miller challenged Mikovits and the WPI to post the genetic sequences to GenBank so that all the scientific reseachers would be able to have a look. To date, the only retrovirus sequences posted to GenBank from the WPI concerning Mikovits research were xmrv sequences. No newly discovered gammaretroviruses. If Mikovits has these sequences, then post them on GenBank. It's just that simple.

    Oh, by the way, Paul Jolicoeur, a renown retrovirologist in Montreal, was doing a very large xmrv research trial and Mikovits promised that he would have access to Mikovits patient cohort to draw blood. Mikovits agreed. Almost a year went by, and Mikovits still refused to allow Jolicouer access to her patient cohort. So I stepped in the backchannel when Cort was head huncho on here. Miller, I,.Mikovits, Jolicoeur, WPI made an agreement that if we dropped our particular IAP assay, she would call off her dogs coming against our research project and would allow Jolicoeur access to her patient cohort to draw blood. She lied to me, Miller and Jolicoeur after Mikovits broke our agreement which jeopardized in the end Jolicoeur research project. It's all saved in email.

    The fact that Mikovits claimed xmrv was associated with every disease known to mankind -hyperbole - such as Fibromyalgia, ME/CFS, GWI,Lyme, Autism without one proven peer review research study. No credible scientists would make such claims without the research to back their statements

    So, I guess she is on her world tour pedaling woo woo wacko conspiracy science to the alternative science crowd and aligning herself with Kent Heckenlively.
    http://scienceblogs.com/insolence/tag/kent-heckenlively/

    Mikovits has gone from savior, saint, martyr and now victim - I see a progression here - as I heard she now carries around the contagion herself. I am surprise Mikovits is not more careful in exposing everyone to this Plague.

    This does not preclude the possibility that retroviruses would not be found in the future with regards to ME/CFS, they just won't be coming from Mikovit's lab at the WPI since they would've been posted by now on GenBank.
     
    Last edited: Mar 22, 2015
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  11. alex3619

    alex3619 Senior Member

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    I have been examining what I call the two hit hypothesis since about 2005, and from time to time I dust it off. Its possible, but we still lack hard evidence.
     
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  12. alex3619

    alex3619 Senior Member

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    On viral brain infection, I am a survivor of measles encephalitis, and there are other patients who have had acute brain infections. However even a low grade brain infection might be enough. It might alter brain function (especially immunology) or even brain physiology such as repair of the blood brain barrier. So its like a pre-trigger, which leads back to the two hit hypothesis. Some patients of course get ME immediately after brain infection.

    The brain is not the only candidate though. How nuts does the immune system go if the heart is infected ... that is a question I ponder about from time to time.
     
  13. Hip

    Hip Senior Member

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    Not that nuts, if patients with chronic coxsackievirus B myocarditis are anything to judge by: I am not aware of any immunological abnormalities or comorbid conditions that arise elsewhere in the body in those with chronic CVB myocarditis, apart from the fact that this heart muscle infection can precipitate heart attacks, and that this chronic CVB myocarditis can eventually turn into the disease of dilated cardiomyopathy.

    Researchers often call the heart muscle inflammation in coxsackievirus B myocarditis an autoimmune reaction, but Prof Edwards said that this is not in fact true autoimmunity. Given that in coxsackievirus B myocarditis, the heart muscle cells contain an intracellular infection with non-cytolytic coxsackievirus B, it is perhaps more likely that this so-called autoimmune reaction in the heart is just the immune system correctly attacking the non-cytolytic coxsackievirus B infected muscle cells.

    Profs Nora Chapman and Steven Tracy's research on coxsackievirus B myocarditis, and the non-cytolytic coxsackievirus B infections involved in this myocarditis, is detailed in this article. These researchers have said that coxsackievirus B myocarditis may be a useful tool for understanding the chronic coxsackievirus B infections found in ME/CFS.
     
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  14. duncan

    duncan Senior Member

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    And let's not forget Lyme cardiomyapthy which claimed three lives in the NYC area last year.

    If we can extricate ourselves form the personality issues and frictions which come hand-in-hand with discussions of retroviral involvement, there is the practical element that should be acknowledged, if not embraced. The retrovirus as the unifier that coalesces disparate trigger mechanisms into a single broad-based malady characterized by ebbs and flows, like a relapsing remitting process, but sometimes down to an daily and even hourly cycle, can be ascribed - theoretically - to either an endogenous or exogenous RV.

    So, regardless if the trigger mechanism were EBV or coxsackie or Borrelia, the transformative agent is a retrovirus.

    But, yeah, sounds neat on paper, and it's kind of a clean logic, but so what? The same can be said about most psych interpretations.

    Still...
     
  15. Hip

    Hip Senior Member

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    What on Earth does that mean?

    Where did you read this?
     
  16. duncan

    duncan Senior Member

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    It means what it says. Do you really need me to break it down for you? I apologize if it reads muddles, but somehow I suspect you can manage to pick up the gist.

    Where did I read this? It's a theory that has been on the table since, I dunno, 2010. I think the more important question is, why aren't you familiar with this by now?
     
  17. alex3619

    alex3619 Senior Member

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    Given that I am Coxsackie 3B positive, and that in countries (e.g. Germany) that do heart biopsies they often find viral heart infection, I do have to wonder.
     
  18. alex3619

    alex3619 Senior Member

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    The endogenous retrovirus angle is still viable. Infectious retrovirus does not currently have traction. If someone can prove high levels of reverse transcriptase then the hypothesis might get traction again. Alternatively they might find the retrovirus reliably this time, unlike XMRV. Otherwise almost nobody in the scientific or medical worlds will listen.

    Many of us are intimately familiar with the retrovirus hypothesis, and its failures. It divided this forum, and was at least as controversial as the current IOM issue. A new forum was created because of this and many people left.
     
  19. duncan

    duncan Senior Member

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    Yes, alex3619. It is just a theory. One with strengths and weaknesses. But one that is embraced by some, despite the drama of a couple of years ago.
     
  20. Hip

    Hip Senior Member

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    If it is a theory, and has not been proven, then it is customary to state it as a possibility, rather than as a fact. So for example, you would write "the transformative agent may be a retrovirus".


    I'd be interested to know how these "ebbs and flows, like a relapsing remitting process, but sometimes down to an daily and even hourly cycle" can be ascribed to a retrovirus.
     
    Last edited: Mar 18, 2015

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