Dr. Bateman answers IOM questions from the community: Part 1
Clark Ellis brings us Part 1 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community ...
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XMRV+ can I transmit this by kissing, sex?

Discussion in 'XMRV Testing, Treatment and Transmission' started by pinkytuscadaro, Jan 3, 2011.

  1. pinkytuscadaro

    pinkytuscadaro

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    I was always told over the years that cfs was not contagious and that I could not spread it.
    Now that I have tested positive for xmrv I am afraid that I could give it to another person.
    I would like others advice regarding this issue.
    Thanks
    Pinky
     
  2. firefly

    firefly

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    The doctors I've talked to (including CFS specialists) have seemed to indicate kissing is safe. But no one seems willing to state anything with certainty. (i.e. the research just hasn't been done.) I would encourage you to email Dr. Deckoff-Jones encouraging her to blog about this, as I already have. I would love to see more informed discussion about this -- about viral loads, culture positives versus antibody positives, ecc. coming from an MD who is up to date on the research. Right now, it's a tough question. I'm in your same situation: generally well enough to date but concerned about kissing. I've gone back and forth in my mind about this. At the moment, I'm opting for cuddling without kissing. (Safe sex would be an option too.) Perhaps I'm erring on the side of caution, but I also feel it's important to talk about it with a potential partner lest it be perceived as a huge breach of trust later on.
     
  3. Jemal

    Jemal Senior Member

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    There's too many unknowns at the moment. There's still discussion if XMRV exists, let alone if it causes disease. So transmission routes are unknown as well.

    What we know of other retroviruses makes it likely it is spread by sexual contact however. The Belgian CFS doctor Kenny de Meirleir has made claims in that direction as well. German research also makes it more likely that XMRV can be spread by saliva (finding XMRV in respiratory secretions). There's also been some research that found 50% of family members were infected with XMRV I think, which could also mean it is spread by saliva. We know from retroviruses infecting animals that saliva is a possible transmission route.

    For now, nothing has been proven yet, though. And many of our partners aren't ill, even after decades of intimate contact. It might turn out they have been infected with XMRV, but so far they don't seem to suffer from it... Now, there is the other side of the coin of course: there are patients who are reporting their partners and children also got CFS.

    At the moment I think there's just not enough data to come to any formal conclusions.
    To be on the safe side we could live like hermits I guess... but XMRV has also been found in up to 7% of healthy controls in one study. This means it's going to be hard not to come into contact with this virus. The cat's already out of the bag.

    It's a dilemma, but if I were in your shoes, I wouldn't let the current state of affairs hold me back.
     
  4. Esther12

    Esther12 Senior Member

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    I agree with Jemal, and wouldn't worry about saliva.

    It seems like CFS is not easily transmitted, even if it is caused by XMRV... and that's still deeply uncertain. I understand it being an extra worry though, and something that might rather spoil the romantic mood of certain moments. I don't think it needs to though.
     
  5. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    I'm a little hesitant to jump in here, but transmission is a serious concern. As Jamal said, those statistics that 50% or more of family members of CFS patients are testing positive to XMRV is troublesome. I'm XMRV or PLMV positive and my adopted daughter also has CFS, as is my husband. Hillary Johnson reported in Osler's Web about the NC Symphony outbreak in the 80's. As the research progressed, they saw that people who shared eating utensils and lived in close quarters were more likely to be infected.
     
  6. Ian

    Ian Senior Member

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    I think if CFS was infectious, we would have figured this out by now.
     
  7. lancelot

    lancelot Senior Member

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    Aren't we doing that now with XMRV???
     
  8. Jemal

    Jemal Senior Member

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    Yeah, CFS certainly isn't an easy disease to figure out. I do think XMRV has something to do with it and that would mean it's potentially infectious. It's likely though the virus can only cause CFS when certain conditions are met. Maybe genetics are involved or some kind of trigger or coinfection.

    Anyway, at the moment I know nobody in my direct surroundings that has CFS, so to me it doesn't seem really contagious or at least something you easily get.
     
  9. lancelot

    lancelot Senior Member

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    i definitely feel CFS/ME is either a biological toxin, pathogen(XMRV) and/or enviromental toxin(heavy metals, GWS-pesticides, nerve agents). I'm open to both a single cause or multiple causes but only one pathophysiology. Whatever the cause(s), i believe with dr bell that it must explain both epidemic(infectious) and endemic(non-infectious) cases of CFS.
     
  10. lancelot

    lancelot Senior Member

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    Wow, i'm so sorry to hear that your whole family is infected. So, this definitely proves CFS is infectious among your family and at the NC symphony outbreak whereby no one was blood related(genetics). Can you tell us who got it first and how long before the others got it?
     
  11. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    Sure- I got sick first, then two years later my husband, then one year after that, our daughter. I wrote in some detail :eek:about our experience on the introduce yourself thread.
     
  12. lancelot

    lancelot Senior Member

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    that's definitely infectious CFS. how are yall doing? mild-moderate-severe CFS? have you been tested for XMRV or anything else?
     
  13. free at last

    free at last Senior Member

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    cfs might be contagiouse if xmrv is a big part, ( maybe saliva we dont know yet, like htlv1 not everyone who gets infected will be Sick, my family havent so far, but my partner must be mrv + as we have been together all through my illness, ( before it even started ) untill more is known caution is needed sorry pinky.
     

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