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The XMRV Confidence Poll

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, May 30, 2010.

?

My Belief About XMRV Right Now Is

  1. I absolutely believe XMRV the major cause of ME/CFS

    23 vote(s)
    22.5%
  2. I think there's a good chance XMRV causes ME/CFS but I need more evidence

    54 vote(s)
    52.9%
  3. I think it's possible XMRV causes ME/CFS but I am very skeptical

    9 vote(s)
    8.8%
  4. I think XMRV may play a role in ME/CFS as a cofactor

    14 vote(s)
    13.7%
  5. I think its unlikely that XMRV is even a cofactor in ME/CFS

    2 vote(s)
    2.0%
  1. redo

    redo Senior Member

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    The other factors, like those mentioned above, are triggers.

    I think that the cause is the combination of one specific bacteriological infection and the virus. And that people can be fine with the virus, triggers that come, and the specific immune dysfunction that may very well be a result of the viral infection. As long as they don't get the specific bacteriological infection that problems with the immune system has opened the door for.
  2. Cort

    Cort Phoenix Rising Founder

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    That certainly nagged at me as I did the poll but I just decided to leave it vague. Its still hard to tell where XMRV is - remember the WPI found that 2/7 samples in the Kuppeveld group that Parvofighter demonstrated seemed so strange - were positive for XMRV! Hopefully some studies will differentiate between the different definitions and we'll know. I'd certainly agree with you that I would think XMRV is much more likely to be found in CCC than Oxford or Fukuda.
  3. awol

    awol *****

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    redo,

    Ok, well I am quite confused on why you seem to think a bacteria problem is necessary. A retrovirus messing with gene regulation and throwing the system off is sufficient when triggered by anything that stresses the immune system. I have ME/CFS, but I do not have a bacteria problem. What bacteria are you nominating as causal? Would you effectively be saying I don't have ME/CFS if I don't have a certain bacteria? I think you are making it more complicated than it already is, unnecessarily.
  4. Knackered

    Knackered Guest

    99% according to Whittemore. Oxford's useless.

    Why? You're smart enough to know most people who fall under Oxford share pretty much zero relationship with those who are covered by CCC. I fail to understand why you'd purposely make it vague. It's precisely because vagueness of this why the more seriously sick people with a neurological condition are still sick after all these years, being lumped in with people who are depressed is damaging and is causing needless suffering and death. To promote this is to promote the longevity of this suffering and death.

    The vagueness surounding "CFS" needs to be finished for good, it doesn't need administrators of major CFS boards promoting it. It's about time users of CFS boards along with those who run the boards start taking responsibility to do something about it.
  5. redo

    redo Senior Member

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    Which bacteria? I think spirochetes are involved in this soup. In many regions twenty to thirty percent of the population have a latent spirochete infection. And I think that it gets dangerous only when the immune system has been opened up by an XMRV infection.

    I think the bacteria is transmitted through other ways then ticks. And that the spirochete is what causes most of the symptoms. It doesn't have to be the classical Borrelia spirochete. It could be other subgroups.

    I don't know of any other group of either viruses or bacteria that causes the exact same symptoms as we see in CFS, except for that one.

    There are many rocks which haven't been turned with regards to this.
  6. awol

    awol *****

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    This is unnecessarily complication. The gene disregulation and immune dysfunction that XMRV is responsible for is enough to explain all symptoms and coinfections. There is no need to muddy the soup with a theory about bacteria. These bacteria may indeed be present and causing symptoms in some people with CFS, but this will be just a sub-group like the HHV-6, EBV and various other sub-groups.

    In my mind, the only other relevant co-factor will be the one that explains why this disease is more prevalent in women.
  7. redo

    redo Senior Member

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    It's my theory of how it is. I didn't expect that you'd get onboard with it.

    When it comes to why the disease is more prevalent in women. And it is. I think the reason for that is much the same as we see with HIV: Women respond to the retrovirus differently then men. Men and women have significant differences in their immune system (in general). There are many studies on that.

    Here's a presentation about HIV and the significant sex difference on disease progression:
    http://www.whicc.net/pdf/Tuesday1/Gender HIV-1 innate immunity_JJC_Final tues.pdf

    Absolutely worth a look.
  8. Countrygirl

    Countrygirl Senior Member

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    UK
    I have a question, which may have been answered here in the past, and I'm sorry if I am duplicating a discussion that has already been covered in detail. I can't remember :ashamed:

    Today, I had a long conversation with a biochemist who is very severely ill with ME and multiple chemical sensitivities. Her condition is so extreme that she has lived in a hut on an organic field for about fifteen years. She is extremely knowledgable and I'm really hoping that I will be able to access her written work to post on this forum. However, her interpretation is very different to that which is posted here. She does have the advantage of being, in her words, the most researched person in Europe and has a mountain of papers of medical results, which are stored in my attic at present.

    I am tryng to arrange a blood draw for her as part of the UK trial. According to the biochemist, however, she maintains that most of the cases of ME are chemical poisoning and she has a bewildering array of case notes and evidence from ME and MCS specialists to prove her case. She firmly believes that XMRV will only be a co-factor and not the cause of the illness.

    What I would like to know from those here who scientifically inclined, is it possible that a gamma retrovirus alone could cause us to produce severe and life-threatening reactions to chemicals? I know many of us, including me, have MCS, but is it possible that XMRV could cause us to have this reaction in the first place. ( I am confused because my illness was triggered/caused by organochlorines) My friend says, no, the toxic exposure is the cause and the infections are secondary. As a biochemist, she worked with organochlorines and organophosphates, developed ME and then severe MCS. So, which comes first: XMRV or toxic chemical exposure? Or are chemical poisoning and ME two different conditions, which produce the same symptoms?

    Anyone, please?

    Thanks

    C.G.
  9. awol

    awol *****

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    Yes, it is quite possible. It is a retrovirus, not just a virus. It inserts itself into our genome. By doing that it is probably capable of completely throwing our normal reactions to chemicals off.
  10. awol

    awol *****

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  11. Cort

    Cort Phoenix Rising Founder

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    honestly Knackered I was tired at the time and it was easier...but I do see another poll coming :)
  12. Knackered

    Knackered Guest

    How about now?

    We're all working towards the same goal, right? I'd support you and so would so many others if you did the right thing.
  13. Gemini

    Gemini Senior Member

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    Countrygirl,

    There is mounting scientific evidence that any chronic infection, including retroviral infections, alter the metabolizing enzymes in the cytochrome P450 system which metabolizes chemicals, toxins, drugs, etc. It is believed this altered metabolism may be caused by chronic immune activation and cytokine exposure, the consequences of a chronic infection.

    If your friend checks MCS research on PubMed there are references to the specific P450 enzymes associated with MCS. HIV research is dealing with this issue as well (PMID: 20084375 for example).

    There is commercially available genetic testing of the P450 system which can help MCS patients determine if they have a genetic predisposition to MCS. For instance, if one had a genetic predisposition to MCS and a chronic infection, that might lead to a more severe case of MCS.

    I hope this helps.

    Gemini
  14. Cort

    Cort Phoenix Rising Founder

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    I agree. I knew I was missing options - just couldn't think what they were at the time :)
  15. Cort

    Cort Phoenix Rising Founder

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