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Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Eric Johnson from I&I, Jul 6, 2010.

  1. Otis

    Otis Señor Mumbler

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  2. SOC

    SOC Senior Member

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  3. Bob

    Bob

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    Thanks for that, muffin... you make it sound like it's well worth reading, and that you got a lot out of reading it...
    All the snippets that i've read have always been fascinating... but... 700 pages?!? Can i really get through that and then remember any of it?!? :(
     
  4. Bob

    Bob

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    Yes, I see this as a serious upcoming problem for our community that no one has started to address yet due to the excitement surrounding XMRV. What of those who get left behind without an XMRV diagnosis? It looks like it might be a very significant proportion of us, like 50% of us, who get tested XMRV -ve.

    I'm sure that the CDC would love to divide us... What's the saying? "Divide and conquer"!

    But the good news is that Judy Mikovits has promised that no one will be left behind... that she won't forget about any of us... And I'm certain that Annette feels exactly the same... This is exactly why the WPI was set up in the first place... to help people with CFS who have been neglected by the establishment, and left behind.
     
  5. V99

    V99 *****

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    Simply we stick together, and those with XMRV fight for those without, and vice versa.
     
  6. gu3vara

    gu3vara Senior Member

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    Considering some people with negative XMRV here are showing improvement on ARV, I wouldn't worry too much about that. The infection might just be hiding like Lyme, where false negative exists and must be diagnose by symptoms. If XMRV is an official cause of CFS, I don't think anything other than another retrovirus (DeFreitas retrovirus perhaps) could be the cause of it.
     
  7. natasa778

    natasa778 Senior Member

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    Some of those XMRV -ve could be false negative BUT also remember what Alter mentioned in the leak, they came across 'related' MulVs in humans. I guess those would not be coming up on commercial XMRV tests, and if present would be more than capable of damage. Hopefully Alter paper will draw attention that other possible retroviral culprits should get a closer look at!
     
  8. Otis

    Otis Señor Mumbler

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    Great point Natasa. I'm very curious about that, a new window may be opening on human disease. Can't wait for the paper!
     
  9. V99

    V99 *****

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    I agree, the chance that negative is still not negative, even from the WPI, may mean it won't be a problem, also the possibility of other MuLV's.

    I say, go CFS team.
     
  10. MaryAnn

    MaryAnn

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    I too agree and don't know which is more scary - having a retrovirus, or back to having no answers. This could be why Dr. Lerner has some who get better; maybe they don't have XMRV, or maybe it hasn't developed into "full-blown" XMRV (HIV into full-blown AIDS), or maybe the immume system in these people has been able to stave off and partially recuperate depending on other pathogens receiving tx, or, lastly, maybe it just hides out in tissue/bone marrow?
     
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Yes, this would be good!
     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I love the idea of having a retrovirus. Of course, I am past childbearing age, already married and don't have any children. But if I don't have a retrovirus, as has been said, I might have some other pathogen which would involve the same issues.

    I suspect that there are many retroviruses that have yet to be discovered. XMRV seems to have unusual features of disappearing from the blood. It also has "triggers", indicating some periods of little or no activity. All of this, of course, contributes to why it was only discovered in 2006.

    How many others are there like this one or with other unusual features? As has been said, someone needs to pull out the DeFreitas work and take another look.

    Tina
     
  13. Dr. Yes

    Dr. Yes Shame on You

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    There is a very good scientific reason to 'stick together', even if XMRV- patients really do not have XMRV or any other retrovirus. That is because they obviously have a disease with very similar symptomatic hallmarks, and thus may have common disease mechanisms at work. Assuming XMRV is causal/co-causal in many or all XMRV+ ME/CFS cases, it will still not necessarily be easy to untangle the mechanisms by which it brings about ME/CFS. Comparing the pathophysiology of XMRV+ and true XMRV- patients could be helpful in shedding light on these mechanisms. For example, if a given abnormality in cytokine profile or neuropeptide expression level is seen in the XMRV- group, one could look for that as a higher priority among the many possible parameters to check in XMRV+ patients.. and of course vice versa. If there are similarities in the downstream pathway of disease between XMRV+ and XMRV- ME/CFS (CCC-defined) populations, then studying one group can help our understanding of the other.
     
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I also suspect that even the soon to be determined standardized test will not catch all of the XMRV positives. I don't know why I get this feeling. I know they are looking at antibodies. I also know that antibodies will show if person is exposed. But, I just have an intuition that there still may be a snag. HIV seems to have the opposite problem. If you come back positive, you have to be tested again to confirm. And it is for antibodies.

    I guess it just seems like such a hard virus to find, I don't think it will every be easy in testing. But I could be wrong.

    Tina
     
  15. Angela Kennedy

    Angela Kennedy *****

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    Am I right Tina that you meant " I DON'T love the idea of having a retrovirus"?
     
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    no, I DO love the idea of having a retrovirus. I know someone with HIV that is fully functional and has been for over 13 years. How much I long for that.

    Tina
     
  17. gu3vara

    gu3vara Senior Member

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    It's far better to have a retrovirus than a mysterious autoimmune/genetic illness for which there is nothing that can be done, I'm on the same side.
     
  18. SOC

    SOC Senior Member

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    I'm with Tina on this. I'm not planning on having any more kids, I know I'm really sick with something that is degrading my quality of life severely. I, too, look at HIV patients and think, "If I can have that quality of life for 25 more years, great!"

    On the other hand, I really, really wish that there were a different explanation for my 18yo daughter who has low-mild symptoms. She has career, partner and future children issues, and a lot longer to live with a retrovirus.

    Sometimes its just a matter of perspective.
     

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