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The real story about XMRV coming out today?

Discussion in 'XMRV Research and Replication Studies' started by VillageLife, Sep 23, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    Remember to breathe, everyone. Also, there's always the option of resisting the urge to reply when a particular viewpoint incites anger within you.
     
  2. Bob

    Bob

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    If any scientist decides that I've got a psychological illness, based on a few individuals involved in advocacy work, rather than looking at the full evidence, then they can't be worthy of any respect.
    So maybe we would be better off without them.
    If Judy Mikovits demonstrated such non-scientific bias, then all hell would break loose.

    I'm just pointing out the contradictions.

    But I do agree that it's a shame that our community cannot work together more harmoniously.
     
    SOC likes this.
  3. asleep

    asleep Senior Member

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    The "leading retrovirologists" were never going to research retroviruses in this disease anyway. If they were, they would have followed up on the findings by DeFreitas, Martin, and Grossberg at some point in the past 20 years. Or they would have expressed interest in the findings of not only Lombardi et al but also Lo et al, etc.

    This attempt to blame the patient community for "new-found" "lack of interest"--which has incidentally been extant for decades and was going to be continue to be the norm anyway--is fearmongering. Before they can get back to ignoring us and back to business as usual, they need to make this inconvenient discovery go away. Painting the patients who have raised alarms at the widespread bad faith shown by these "leading retrovirologists" as the "bad guys" is an attempt to pacify the community to more easily swallow the next political maneuver.
     
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  4. oceanblue

    oceanblue Senior Member

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    @ Ecoclimber, Redo
    Sadly I fear you are right. Retrovirologists are human too - if they get bombarded by vitriol its not surprising they attribute it to patients in general rather than a few with extreme views, because that's what it feels like. They aren't going to conduct a scientific survey to see if it's representative (though they might drop in to some patient forums...).

    I think there is a difference with the Psych lobby. Retroviroloists have lots of other good projects to work on that will do just as well, but without the hassle. For psychiatrists, CFS seems to be a Holy Grail. Many years ago I came across a letter from an American psychiatrist explaining their interest: an illness that can be shown to be wholly down to psychological factors would validate a psychosocial view of illness. For him, CFS wasn't just some backwater - it was the key battleground in winning the War against a 'simplistic' biomedical view of ill health. That's why we can't shake off the Psych lobby. Though of course, there was the recent tragic departure of Simon Wessely from our particular battleground.

    I've often reached the same conclusion, yet still seem to find myself coming back for more...
     
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  5. Esther12

    Esther12 Senior Member

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    Almost everyone gets caught up in their own stupid prejudices about something. I guess you could decide that virtually no-one is worth or any respect... but we'll end up pretty isolated if we take that approach. I don't know how it's best to move forward with CFS. Careful, cautious criticism of the worst aspects of CFS research can't do any harm (actually - that's wrong. Any criticism of any psychological research seems to lead to "You're stigmatising mental health issues. You don't understand how the mind can affect the body. Naive Cartesian Dualism!!!"). It's all a bit troubling.
     
    Sam Carter likes this.
  6. Angela Kennedy

    Angela Kennedy *****

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    Key observations asleep. Thank you.
     
  7. Esther12

    Esther12 Senior Member

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    Oops - I missed out a 'not', It seems like you knew what I meant anyway.
     
    Sam Carter likes this.
  8. Bob

    Bob

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    Well, schizophrenia is a psychiatric disease, but it still deserves to be investigated and researched.
    So even if these scientists are so unintelligent that they can (allegedly) decide that ME has a psychological basis, based on their (alleged) dealings with a few dissenting patients, then that still doesn't give them reason to pull out of the research.
    So the 'psychological' argument being used in this thread is really inappropriate.
     
    Wildcat likes this.
  9. leela

    leela Slow But Hopeful

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    Redo, totally with you on this excellent point.
     
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  10. oceanblue

    oceanblue Senior Member

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    Maybe I wasn't clear. I was saying it was reasonable for them to decide it wasn't worth being on the receiving end of all that vitriol, not reasonable of them to label ME patients has having a psychiatric illness.
     
    Sam Carter likes this.
  11. firefly

    firefly

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    Eco, your comments are an important warning, yet I also feel you are portraying a picture of unnecessary doom. The story belongs to all of us. At any point it can be turned around. Our community needs to find a way to stand for its rights, make demands, and yet do so with respect. Martin Luther King is an amazing example. Ghandhi is another one. There are models to follow. This need not be doomed. The most important takeaway, is, I believe, not to forget common humanity. Retrovirologists have needs too, ambitions, hopes, fears, motives, incentives. Let's all think twice before penning abusive personal emails to researchers. They are unlikely to produce the results we would like them to.
     
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  12. Bob

    Bob

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    Oh, I see. I misunderstood your post ocean.
     
  13. asleep

    asleep Senior Member

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    But justifying their future disinterest as a response to recent vitriol is a red herring. It certainly cannot explain why, for two decades, they've been so disinterested in studying a disease that looks very possibly retroviral by all second-order observations.
     
  14. leela

    leela Slow But Hopeful

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    Let's remember that we don't know yet for sure that "they" did have this response to recent vitriol.
    We are just going by what Ecoclimber said. He may have reported the truth, or someone's truth, but we don't know if, who, or what yet.
     
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  15. Sam Carter

    Sam Carter Guest

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    I'm not sure this is correct, asleep. If you search Pubmed you'll see that many groups have followed up on the Lombardi/Mikovits & Lo papers.

    The reason for the growing scepticism is that no one, including Lombardi/Mikovits and Lo, can reproduce the original findings when samples are properly blinded.
     
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  16. asleep

    asleep Senior Member

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    You are collapsing the two studies into one here to make this point. Note what I said:

    Yes, many labs have followed up on Lombardi et al, but I'm not aware of any that have followed up on Lo et al. That is the point. After 2 decades of ignoring this disease the "leading retrovirologists" show up with a singular, strikingly-negative focus on Lomardi et al while continuing to ignore the remainder of supporting evidence.

    But I'm being generous by saying "followed up". All the efforts of the "leading retrovirologists" have been toward discrediting and disproving HGRVs, and specifically directed at Lombardi et al. There is a marked difference between discrediting/disproving and scientifically following up. Luckily, this difference is also discernible. The former can be distinguished by a number of bad faith actions: declaring you will not find something before you even begin; overreaching and definitive conclusions; unwillingness to collaborate closely with the original authors (Bieger is the only exception to this); insistence that a novel discovery be fully understood a priori without any willingness to acknowledge the inherent exploratory nature of novel discoveries; ignoring and misinterpreting data supportive of the original discovery (Lo et al, macaque study, etc); coordinated (always negative) media campaigns; appeals to "consensus" and numbers of studies without evaluation of the particulars of the data; calls for retraction on the basis that a paper is "wrong" (remember Stoye and Coffin have been calling for retraction for many months now); blocking funding to and further publication from the original discoverers, then lambasting them for speaking about data prior to publication; blocking the authors of potentially one of the largest retrovirology discoveries in a couple decades from presenting at top retrovirology conferences; a marked asymmetry in establishment criticism directed toward positive studies; actually trying to claim that exact replication is not important; etc.

    We've seen these actions and behaviors in spades now for two years. And I'm supposed to accept that these actions represent a good faith, genuine scientific effort? Please.

    The only time this has happened for Lo et al is in the recent BWG paper, and I've already provided for you a number of factors that make this, at the very least, not as black and white as you keep presenting it.
     
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  17. Sam Carter

    Sam Carter Guest

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    -------------------------------------------------------------------------------------------------------------------------------

    Science. 2011 Jul 1;333(6038):94-7. Epub 2011 May 31.

    No evidence of murine-like gammaretroviruses in CFS patients previously identified as XMRV-infected.
    Knox K, Carrigan D, Simmons G, Teque F, Zhou Y, Hackett J Jr, Qiu X, Luk KC, Schochetman G, Knox A, Kogelnik AM, Levy JA.

    .......
    We found no evidence of XMRV or other MLVs in these blood samples. In addition, we found that these gammaretroviruses were strongly (X-MLV) or partially (XMRV) susceptible to inactivation by sera from CFS patients and healthy controls, which suggested that establishment of a successful MLV infection in humans would be unlikely.


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    J Virol. 2011 Jul;85(14):7195-202. Epub 2011 May 4.

    Absence of XMRV retrovirus and other murine leukemia virus-related viruses in patients with chronic fatigue syndrome.
    Shin CH, Bateman L, Schlaberg R, Bunker AM, Leonard CJ, Hughen RW, Light AR, Light KC, Singh IR.

    ... We did not find XMRV or related MLVs either as viral sequences or infectious viruses, nor did we find antibodies to these viruses in any of the patient samples, including those from the original study....


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    PLoS One. 2011 Mar 9;6(3):e17592.

    Investigation into the presence of and serological response to XMRV in CFS patients.
    Erlwein O, Robinson MJ, Kaye S, Wills G, Izui S, Wessely S, Weber J, Cleare A, Collier D, McClure MO.

    ...We have again failed to detect XMRV or MLV-related sequences in 48 of our CFS patients, demonstrating that our failure to find XMRV in CFS tissue is not a reflection of the primers used in the amplification process...


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    PLoS One. 2011 Feb 23;6(2):e16609.

    Lack of infection with XMRV or other MLV-related viruses in blood, post-mortem brains and paternal gametes of autistic individuals.
    Lintas C, Guidi F, Manzi B, Mancini A, Curatolo P, Persico AM.

    ...No MLV-related virus was detected in blood, brain, and semen samples of ASD patients or fathers. Hence infection with XMRV or other MLV-related viruses is unlikely to contribute to autism pathogenesis....


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    Retrovirology. 2011 Feb 22;8:12.
    Serologic and PCR testing of persons with chronic fatigue syndrome in the United States shows no association with xenotropic or polytropic murine leukemia virus-related viruses.
    Satterfield BC, Garcia RA, Jia H, Tang S, Zheng H, Switzer WM.

    ...Using highly sensitive and generic DNA and RNA PCR tests, and a new Western blot assay employing purified whole XMRV as antigen, we found no evidence of XMRV or MuLV in all 45 CFS cases and in the 42 persons without CFS. Our findings, together with previous negative reports, do not suggest an association of XMRV or MuLV in the majority of CFS cases....

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    PLoS One. 2010 Jan 6;5(1):e8519.
    Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome.
    Erlwein O, Kaye S, McClure MO, Weber J, Wills G, Collier D, Wessely S, Cleare A.

    ...XMRV or MLV sequences were not amplified from DNA originating from CFS patients in the UK....

    -------------------------------------------------------------------------------------------------------------------------------
     
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