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XMRV--Re-infection from partner?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Sushi, Dec 1, 2010.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Hi Everyone,

    I don't want to stoke fear-fires--especially when we don't have the research to back it up--but De Meirleir is pretty sure an active XMRV infection can be passed on through sexual contact. He wants to test the partners of XMRV+ patients whom he is treating and treat them as well--if they have an active infection.

    At least this is what I am getting from a Dutch forum. I am reading it with the dubious help of Google Chrome and its automatic translation function, so there is a lot of room for error.

    Here is Chrome's translation:

    "So this afternoon I was at the Meirleir.
    I'm MLV-positive.
    My friend was there and it is so: if you're positive, there is much chance that your partner is also positive, BUT, he expects that most partners simply antibodies will have (serology so), and so just healthy carriers . but if the partner is the active form, he must also be treated differently because he can always re-infect you and has no sense to treat yourself, because you just re-active can be infected by your partner."

    Here is a link for those who want to read the discussion:

  2. Jemal

    Jemal Senior Member

    I am Dutch and Chrome's translation is pretty good (for a program).

    A patient of De Meirleir does indeed claim that the doctor said that you can reinfect each other. This sounds pretty dubious to me though, as at the moment there is no cure for this retrovirus. You will always stay infected.

    I do think though that when the time comes and XMRV/MLV are found to be a cause of ME/CFS, you need to have your entire family tested and treated. Viruses can mutate and you can be infected by different strains of a virus. So treating infected family members does seem very wise.
  3. Esther12

    Esther12 Senior Member

    I think there's talk of 're-infection' being bad with HIV too - it doesn't require that either party were previously cured though. Just that being re-exposed can be bad.

    I think it's still a bit controversial with HIV, and we know so much less about XMRV that I'm not sure anyone can realy say.
  4. gregf

    gregf Senior Member

    Sydney Australia
    We need to be cautious as proof is not certain yet.
    But on the other hand there is a need to warn people.

    So here are my own conclusions that I am using personally.

    XMRV should be treated at least with the same precautions as HIV.
    In fact, it may be more contagious then HIV as it may be transmissable
    in saliva and aerosol (sneezing) in close quarters.

    Therefore, no one with grounds to suspect they have XMRV should have
    sex with anyone who does not have XMRV. They should not share any item
    in contact with blood or saliva, such as tooth brushes. Eating utensils and
    cups should be thoroughly washed before use by others.

    Kissing mouth to mouth, may cause transmission. But this may turn out to be
    a small risk.

    People likely to be XMRV positive should not have children. There is risk of passing
    XMRV on to the baby as happens with HIV. In addition, even if the same precautions
    as HIV mothers take are used, this may not be enough as there may be a chance
    children have an Autism spectrum disorder and this probably happens to the fetus
    before birth.

    Additionally when the virus is passed on, there is a significant chance of the recipient
    getting one of many forms of cancer. Family members who get the virus, but do not
    get ME, are at a higher risk of cancer than the patient with ME.

    I think that many people who have had lymphomas, thyroid cancer, brain tumours,
    and other cancers, are really ME victims, who developed cancer at the same time.
    Their tiredness and other symptoms are concluded to be symptoms of cancer.

    I think it may be possible that ME is the bodies defence against the virus or even cancer.

    People probably with XMRV should take great care to capture a sneeze or cough
    in a hanky or tissue.

    One other topic has received little research yet : is XMRV endogenous in humans ?
    If it is, it is passed on to a baby in the DNA of germ cells, that is sperm and eggs.
    Fortunatly, it looks like XMRV is not endogenous in humans as some/most babys
    of XMRV patients are born XMRV negative.

    At the moment I am looking for a partner who is (or is likely) XMRV+ and accepts
    that, at least until we know more, that we can not have children. Cross transmission
    is likely, more likely from partners with a higher viral load, which to me means men
    may be at higher risk from their female partner, as sadly women suffer more with ME
    probably because of higher viral load due to hormonal reactivation of the virus.

    As some one else here said, God what a mess.

    Also I believe that medical authorities have known, or were told this for over 20 years.
    Which makes the CDC position totally criminal. I do not want the CDC to change its
    position on ME/CFS. The more they persist, the easier it will be to hang them in court.

    May I also mention that I believe our greatest problem is patients who habitually call
    this illness Chronic fatigue Syndrome. That is the name of psychiatric illness defined
    by the CDC. We have ME. Until the court case is over we should use the compromise
    name ME/CFS only to ensure the CDC is brought to justice for causing a world wide epidemic.
  5. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    I think it's getting pretty far ahead of what we know now to worry about "re-infection" from an existing partner. It's an issue with HIV even if both partners are positive, because HIV mutates so rapidly, so you could catch some different strains from a partner. We don't know enough yet to know if it's an issue with XMRV, and if it's spread by more casual contact (saliva) then all bets are off.

    Taking up with a new partner is a whole other kettle of fish. I worry about this one myself, because I'm single, and not even a little bit ready to write off my future sex life, let alone ever having another long-term partner. Sigh.
  6. Tia

    Tia Senior Member

    Couldn't agree more on the part about finding a partner with xmrv who accepts that there will be no children.

    Also about not calling it Chronic Fatigue Syndrom but ME, because just like you say it sounds like that old stigma where they won't take us seriously, but with ME it sounds more like MS and everyone knows that's serious.
  7. Jemal

    Jemal Senior Member

    If this virus is already in 6% of the population (maybe more, because tests are still giving false negatives and there seem to be different strains) and it can be spread by things like saliva, then it's already too late to stop this virus from spreading. Many people with HIV don't even know they have HIV, and that doesn't only happen in "third world" countries. Some people don't even want to know they have a virus and if they know, they don't want to have a treatment.

    In order to stop this virus you would have to test the entire population and quarantaine the infected or vaccinate everyone. Both options are not feasible. You can't quarantaine 6% of the population, without massive riots and vaccinations are not available at the moment. Both options would come at immense cost. Also, not everyone wants to be vaccinated either (because of religion for example).

    Besides that, I don't think people are going to stop having babies, because they have XMRV. Especially if they are feeling fine!

    It's highly likely it's already too late. If this virus is for real, it has gained a foothold and it's here to stay. We then need to adjust to that reality and the medical world needs to work around the clock to find treatments and vaccines. Only a massive vaccination program might protect a part of the population from being infected with such a virus. People with XMRV will continue to have children though and in the end it will still be likely that XMRV will infect almost everyone (because XMRV+ and XMRV- will mix).

    Now, there's still much that we don't know. Especially how the virus is transmitted and if everyone is in danger or only under certain circumstances for example, so the above is a theory. But I genuinely believe it's too late to stop this virus, it will continue to be part of the DNA of at least some of the population. At least until we find technology to cut such viruses from our DNA... and that is science-fiction for now.
  8. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    I agree with Jemal that the cat is very likely already out of the bag. Prevention of ME/CFS is probably going to be not as simple as avoiding XMRV infection. If 5% of the population is already carrying it, but only our small numbers of ME/CFS patients are actually sick from it, then it's far from being just our problem - it's everybody's problem.
  9. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi Jemal

    I recall reading somewhere, probably on PR, of at least two studies aimed at either removing HIV from the genome or inactivating it via hypermutation. This is in animal testing stage, but I don't recall any details. If it can be translated to XMRV, we have a cure - removal from the genetic code. This is however one, maybe two decades away for us.

    HIV can also be prevented from transmission to unborn children using antiretrovirals. If it hasn't been genetically incorporated into the germline, it can be stopped. It should be so for XMRV.

    On precautions to prevent spread I have been trying to prevent risk since last year. I do notice I have slipped up when I am very tired and in public, because my brain is offline, because I ordered a dessert at a restaurant dinner I was at recently (cutlery, saliva risk). However, most with the virus don't even know they have it. There are no signs. On the other hand, even living closely with someone for decades only gives a 50% chance or so of transmitting it. All preventative measures are precautionary only at this point, and it may be that some of them will be unnecessary.

  10. Jemal

    Jemal Senior Member

    That's good news and I certainly hope they will be able to come up with something to deactivate retroviruses. Removing stuff from our genetic code does sound a bit scary though, at least the potential side effects.

    True, but for many people this treatment is too expensive.

    Also with the arrival of more successfull treatmentss like HAART, more people are taking risks again. A few weeks ago it was announced that the amount of HIV infections is rising again in the Netherlands. I think the amount of HIV infections is now in general rising again, after years of dropping. So, more than 30 years after its discovery, HIV is still claiming many victims. The amount of people living with HIV is still rising, though the amount of deaths is now mostly dropping.

    This is why I am a bit pessimistic about stopping XMRV.

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