XMRV--let's stay calm for ourselves, and our spouse or girlfriend

Discussion in 'Fibromyalgia Main Forum' started by hubcap_halo, Oct 9, 2009.

  1. hubcap_halo

    hubcap_halo New Member

    Hi all,

    Please scroll down for an intelligent reply from Slayadragon about contagiousness of CFS--and staying calm. It helped me in talking to my Girlfriend

    Last week I had a condition that was generally not thought to be contagious.
    We've never seen rampant partner to partner spread of CFS.
    No girlfriend in my 13 years of having this has ever "caught CFS." And no woman
    I was with before that had it or has developed it since.

    I want to stay calm and only talk to those close to me based on the facts.

    And 13 years of experience of no one I know catching this from me.

    Let's all support each other as we learn more. And keep this in perspective. One study. Very new.

    [This Message was Edited on 10/10/2009]
  2. im just all over the place at the moment,since i read about this XMRV.what about my kids,and my job?can my sweat spread this thing?

    i so wanted to know what it was,but i didnt want it to be contageous.

    im seeing my doctor to ask if i can have my blood tested for the XMRV.i hope i can.

    try and be strong all,we need to support each other more than ever now.

    love fran
  3. Slayadragon

    Slayadragon New Member

    It's increasingly clear that most illnesses have a viral component.

    This includes cancer, heart disease and obesity.

    Insofar as CFS is contagious, it seems to be through casual contact.

    Otherwise there wouldn't be epidemics in schools.

    A large majority of people who are exposed to CFS sufferers (including spouses) do not get the disease.

    This suggests that it's not especially contagious even across close contacts.

    My understanding is that the parent/child incidence is a lot higher than the spouse/spouse incidence.

    That makes it seem that (as is not the case with AIDS) the genetic component must be relatively large.

    My understanding is that CFS specialists have long said that the disease (with the "killer flu" component) is transmissible in the early stages but not later on.

    Their having identified the particular virus wouldn't seem to change that.

    If it were transmitted like AIDS, it would seem to be likely to be especially present in the same risk group as AIDS.

    This disease is especially prevalent in women in their 30's, 40's and 50's. These folks do have sex (sometimes anyway!), but certain other groups are much more promiscuous. They don't get other sexually transmitted diseases nearly to the extent that other groups do.

    There seems to be no evidence that people who are at risk for most sexually transmitted diseases get this one to any greater extent than the rest of the population.

    There have been some hints that health care workers were especially apt to get CFS, at least in the 1980's. But that could just be from being in casual contact with many sick patients rather than because of exposure to blood or body fluids. By 1985 (when CFS first emerged), most healthcare workers were using gloves.

    Dr. Cheney says that it's transmissible through sweat, tears, sputum, phlegm, and nasal secretions. People could get it anywhere.

    I personally am not going to worry about it, therefore.

    It would be nice if everyone I meet in the future doesn't get bent out of shape about it.[This Message was Edited on 10/10/2009]
  4. hubcap_halo

    hubcap_halo New Member

    Staying calm, waiting for more information is very wise.
    And supporting each other in staying calm is also a great idea, thank you.

    I just watched myself lose a night of sleep over a news story. A news story that we have no idea what it means for any of us yet. I am committed to not letting that happen again.

    Just the fact that spouses and boyfriends and girlfriends and friends aren't getting infected in large numbers (I personally don't know of any cases) is telling.

    The exception I have seen is in families one generation apart which suggests as you say a more genetic component than infectious. My aunt has MS, for example.

    I will make it my mission to speak with my girlfriend about the facts as we know them and she and I can make decisions on how to be together until we know more.

    I've been making progress, Improved in the last two months and I'm not going to let something that, for now, is just a new idea---make me stress and lose ground.

    And if this proves to be a significant find, then let us use it to lobby for the studies and treatment we deserve.

    Thank you again, Slayadragon. Very helpful!
  5. jasminetee

    jasminetee Member

    I'm really glad to see this issue brought up and I appreciate you telling us that none of your girlfriends have gotten CFS Patrick. None of my boyfriends have either in the 15 years that I had CFS before being married and my husband of 9 years shows no signs of it either.

    I've always sweated like crazy and no one I know has ever gotten CFS from me and I hug everybody. I also shared a lot of drinks etc... with friends, none ever got CFS from me.

    When I first came down with Chronic EBV in college I had 9 roommates and many were in my room taking my temperature daily, some hugged me and one of them became my boyfriend at that time and none of them got sick at all. I kept in contact with them for many years.

    I do think that some people may have gotten CFS from kissing someone as that has been reported here and elsewhere, at least that's what they think as the other person they were with was sick at the time. It's very mysterious but I keep thinking of the groups of people that have come down with CFS at the same time or within days or weeks of each other and then we're back to some kind of airborne event.

    There were many teachers who all got CFS up in Truckee CA after sharing the same workroom together. A ladies basketball team all came down with it. Many nurses at a hospital all came down with it. Stewardesses supposedly get CFS disproportionately from what I've read recently. Whole families get it at the same time after contracting the flu or mono.

    Most cases though are isolated it seems. Also, many of the people who initially get sick get well again while the rest go on to develop long-term CFS.

    I've heard of pets getting CFS from their owners but the majority of people with CFS that I read about don't have that problem.

    I'd say that if you've gone years without infecting others you are probably not contagious.

    [This Message was Edited on 10/10/2009]
  6. MsE

    MsE New Member

    Your comment is appreciated. I, too, refuse to get all fussed up about this.
  7. hubcap_halo

    hubcap_halo New Member

    Remember the initial excitement after Montoya's first Valctye study? Something like a 75% success rate. And later this was not the case. And so Valcyte may have helped some, but the initial excitement was premature.

    Now we have the reverse. One new study. One. And we have excitement/panic.

    It's time for the old medical motto--'First do no harm.'

    And to me that just means---chill.
  8. TigerLilea

    TigerLilea Active Member

    Honestly, I don't understand what all the fuss is about. This is yet another "unproven theory" that the media has jumped on, and it would appear the CFS/ME community has jumped on, also. If it turns out that we do have XMRV, then I don't see how it can be contagious. I have had CFS/ME for 18-1/2 years now, and I don't know of one single person who has contact with me that has this disease. Surely everyone around me should be sick by now if it were contagious.

  9. acer2000

    acer2000 New Member

    I am super excited CFS is getting reseach money and I think the WPI and Dr. Mikovitz should chase down every lead they can get their hands on. However, I agree with the sentiments here. We should all take this with a grain of salt. We don't even know if these stats will play out when they test the larger population - or even if they do whether this virus will be the cause of the symptoms. Also, I think the comparison to HIV was inappropriate and premature of them. It gets people to take notice, but it also uneccesarily strikes fear in the hearts of people before they really know anything. And even if the virus is transmitted like HIV, causes a smiliar problem, etc... (which is *total* speculation) most HIV drugs are specific to HIV - its a pretty big leap to say they would work for this.

    The two other human retroviruses HTLV I and II rarely cause outright disease in humans, they slightly increase your risk of getting cancer if you cary them, and while they can be transmitted via blood products and intimate contact - the chance of catching them even with unprotected contact with someone who has them is not high.

    I think the big lesson here is that the NCI/WPI has good PR people. :)

    Lets take a step back and see where this goes.
    [This Message was Edited on 10/10/2009]
  10. banya

    banya New Member

    I went to a new doctor a few months back; one who is more interested in research and finding viruses and pathogens. He told me up front that fibro and cfs are infectious diseases. He as found different infectious "bugs" than the WPI to be in more than 50% of the CFS/FM cases he personally tests.

    What he believes, actually, as that we're dealing with a bunch of different ones- it's just not one bug that is the problem. The two most recent bugs he's found are malaria like and they tend to hide out in biofilms. It's nice to see that at least we are gaining more knowledge about what is hiding in our blood, despite the fact that we haven't yet figured out what will kill these things.

    I also try not to worry too much about the infectious nature of this. I've been married for many years and haven't given it to my spouse. I worry more about my kids. They may have inherited my assumed genetic defect making them more likely to become ill one day.