another question about xmrv

Discussion in 'Fibromyalgia Main Forum' started by loto, Dec 30, 2009.

  1. loto

    loto Member

    Has anyone ever heard of any couples that both have CFS or FM? I'm just curious, if these conditions might be from the virus, if any couples or family members or friends, etc have the same illnesses?

  2. ladybugmandy

    ladybugmandy Member

    i have heard of several cases where spouses both have it and several cases where multiple family members have CFS and/or FM.
  3. spacee

    spacee Member

    Dr. Nancy Klimas is a well known CFS researcher with the Univ. of Miami School of Medicine.
    Originally, she was studying HIV but she decided to use a 'normal' control group and an CFS "control" group. (Got us some research without funds, bless her heart).

    So, now she sees HIV patients one day and CFS the next. She said that it is uncommon to see spousal pair who both have CFS. It does happen occasionally but usually they have both had a "big" virus that started their CFS.

    Dr. Cheney seems to agree with her opinion but she explains it much easier.

    Over generations DNA fragments of viruses (possibly other things) have attached themselves to a human's dna. Sometimes that has worked out for the good, some time it did nothing, something resulted in illness.

    Can you think of illness that seem to run in families? That is what she says this XMRV does. Just because one parent has it does not mean that the child/ren would get it too since they get their DNA from both parents. So, the bad dna could have skipped them.

    Then, she thinks it takes a triggering event like an another virus to activate the XMRV. Or it could be a stressor like childbirth, surgery, auto accident to do it.

    They think the virus jumped to humans from a mouse within the last 100 years.

    So, Dr. Cheney and Dr. Klimas are in the same boat on this thinking.

    Hope that helps.

  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    So, hypothetically, one person could have CFS, resulting from XMRV infection. And their spouse may have the virus but never came down with CFS. I think this is also very common.

    Also, the spouse may have XMRV, but it goes into other cells, causing a cancer, say..... prostate cancer. So the person got an illness from XMRV, just not CFS.

  5. ladybugmandy

    ladybugmandy Member

    i agree! it often shows as other diseases such as autism.

    i still cannot believe what a huge discovery this is and the far reaching implications it will have, even on diseases which were considered mental illnesses before!

  6. slammed

    slammed Member

    no doubt there are some great minds focused on this issue, but sometimes things can be "over-thought".

    i think this virus is extremely contagious, more so than the WPI study indicates, and this area of _Degree of Contagious_ , along with modes of transmission warrants much more study. too many people getting it too easily, as i see it.

    i remember about 3 years ago on this very forum, i was taken to task by some strongly opinioned people because i even dared to say that it was contagious. People were afraid. well, it seems we're making progress.

    i have to say, i didn't want to contribute to a panic back then, so i just stopped talking about it. times have changed.

    it's a little like somebody says" well, i don't get poison oak; i'm not afraid of it." but if they were challenged to roll around in that poison oak with their clothes off, they won't do it. my point is, those who think it isn't contagious or that there's some genetic theory in play, i would challenge them to be exposed to my saliva in any way. WPI says "not via air, i.e. coughing, sneezing", sharing utensils i suppose. sorry, i just don't agree with that; especially in an enclosed area such as a small room with no ventilation, or in a car with the windows up! they need to go back to work on that part.

  7. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    And, it could be there but not show up as any illness.

  8. fight4acure

    fight4acure Member

    Hi! If Dr. Klimas is right, then I don't have CFS. Whatever I have has a strong genetic trait because about 10 others in my family have it. Could be a virus other than XMRV, or could be that XMRV is spread differently.

    While I have high regard for Dr. Klimas, this is one time I will not agree with her. She does not have a clue, nor do researchers, about how this virus is spread. Or, maybe she ends up being correct and that would mean that those in my family who also have CFS-like symptoms might have some other virus, or genetic "gift."

    She might have said this prior to the news of CFS being strongly correllated with XMRV, because she has no idea how XMRV is spread.

    Fight :)
  9. fight4acure

    fight4acure Member

    I know that the last three men I dated have some weird stuff going on in their health. I swear it is CFS, but no doctors have diagnosed them as having such, because most doctors think that men don't have CFS, and yes, most doctors don't have a clue about this illness.

    No one knows how this XMRV is spread, and for anyone to tell anyone otherwise without real proof, is foolish!

    Fight :)
  10. loto

    loto Member

    I work at a Special Education place that has a large classroom of children who are diagnosed with autism. I do a lot of data entry for funding for a 3 county wide co-op and have noticed that the younger children are given this "disability".
    Just makes me wonder why so many are "called" autistic. Sometimes I wonder if they are labeled that way because no one really knows what exactly is causing there troubles.

    Just like some people are diagnosed with FM because they can't come up with any other explanations.
  11. TigerLilea

    TigerLilea Active Member

    I'm not so sure that CFS is a contagious disease. My thinking is that if it were, then at least some of the people I know should have it. They don't. Not one single person. Considering I have had this for the past nineteen years, someone should be sick by now if I'm contagious.
  12. spacee

    spacee Member

    I agree that we the sick ones notice what goes on around us better than the docs, really.

    But wanted to tell you that Dr. Klimas isn't alone in her thinking. She just explains it easier. Dr. Cheney thinks the same thing.

    Then I will add this. Ok, suppose the XMRV can only be transmitted vertically (parent to child) but Dr. Peterson said one time that it is small enough to "piggy back" on EBV. Doesn't that have a familiar ring? CFS was first called Chronic EBV?

    I once met a woman who posted here, then did the Marshall Protocol. Her entire family for three generations was sick. I think eventually it was determined to be Lyme.

  13. sleepyinlalaland

    sleepyinlalaland New Member

    I certainly feel CFS/FM has ability to be inherited (my mother, me, daughter), but if it is contagious it must be under very RARE circumstances. After all, if those nearest to us (outside of blood-related family) could "catch" CFS...we'd feel a lot less lonely and misunderstood!
  14. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Folks, the answers given by Mikovitz, Peterson and Klimas make sense.

    Mikovitz: The virus can be dormant and also needs another factor to be turned on. So many people can have it and it not cause illness. This also explains why it is more common in women, especially in hormonal transition periods: adolescence and perimenopause. (She said progesterone is a trigger that turns on the virus.) Also, she said cortisol, which explains why stress and activity makes crashes. And, she also said another virus, stimulating the immune system to be turned on, also turns on the virus. So many will not have the combination, only the XMRV. So they won't get sick. This is not like HIV or the flu where anyone who gets the virus gets sick. This virus lies dormant. And as I said, Peterson and Cheney can tell you that lymphomas are higher in people with close contact with CFs patients. Could it be that they have the XMRV, and it led to cancer in them?

    Peterson: XMRV is not the only factor that causes CFS. He suggests it may piggy back on another virus. That would mean, you must have both to get CFS. So again, other family members might have XMRV, but not the other factor.

    Klimas: This virus is passed parent to child, but even then, there is only a one in four chance, based on basic genetics, that one parent will pass it on to one child. She is basing this on the mouse version of this virus that is passed parent to child. I don't know if that is an automatic that it is true of the human version. But Coffin said these viruses, the mouse and human version are almost exactly alike. So if there is a one in four chance of passing XMRV to any one child, and the child must have a trigger to cause CFS, then it is completely understandable that many of you don't have relatives with CFS.

    But that does not mean they don't have XMRV. And it doesn't mean they won't get sick later.

  15. fight4acure

    fight4acure Member

    I'm glad I did not spark an argument on here by saying what I said without thinking about how one might react to it. I'm glad there are really civil people on here which have made this conversation rather interesting!

    I do think that the virus piggy backs with other infections, and/or appears through some type of transmission.

    I do see many around me becoming ill with many of my symptoms. Do I have CFS? Do I have XMRV? Do I have Lyme disease like my doc said I did years ago? If so, is Lyme disease contagious?

    Again, lots of questions have not been answered, including the question of if XMRV is contagious or not, and in what way. According to researchers, they do not know how it is transmitted. They can only speculate at this time. With further research, it will be nice to know how this is tranmitted, because then we all can have peace of mind with this horrible virus they say we have.

    Also, if anyone does not test positive, do not worry. I hope you'll find your answer eventually as to what is causing you such misery. I may be one of them since I strongly believe I'm contagious. Call me crazy if you want, but it is true what Spacee said, we can see others around us becoming ill, faster than doctors can. I'm not sure what I have but I believe there is a casual contagiousness to it. May I have something different, or is there something we don't know? Hopefully researchers find out how this is transmitted, and soon.

    Fight :)
  16. slammed

    slammed Member

    there is this discussion now about whether CFS is contagious or not. i too add my congratulations to participants who are behaving in a civil way while putting forth their thoughts. this topic tends to bring out negativity at times.

    it occurs to me that when the question is asked"is CFS contagious", there often is missing the component of "which kind of CFS are we speaking about"? is it the Incline Village subset/cohort which tends to have xmrv as its defining component, or is it another not-so-virulent form or cohort which causes bad symptoms , just not to the degree that xmrv causes; let's say chronic Epstein Barr fits this.

    so obviously we need to be comparing the same cohorts if we speak of relative degree of contagious: xmrv to xmrv, chr EBV to chr EBV. It does no good to compare xmrv(the apple) to chrEBV(the orange). Or compare any other virus to the different virus , whatever it is; this is where tht meaningful data surfaces; otherwise it is cross contaminated by other forms of CFS (which apparently do exist, not just xmrv), and first thing you know we are on different pages talking about why CFS is contagious or isn't, but not speaking about the same subsets.

    a lot of confusion and needless teeth-knashing can be avoided by simply stating which subset is being discussed. Eliminate unnecessary confusion and useless , irrelevant thoughts simply by stating:" i'm speaking about xmrv and its' possible contagious way", or the same for any other subset,first clarified before going into it.

    Now, in my experience with xmrv(i've tested positive), it seems very contagious and virulent. I am deathly afraid to kiss anyone, or even breathe on anyone, let alone cough or sneeze. Much of the joy of life is gone. this is my experience. Others may not be the same, but for xmrv I would expect similar.
  17. TigerLilea

    TigerLilea Active Member

    Autism is NOT mental retardation. It is a neurological disorder.
  18. TigerLilea

    TigerLilea Active Member

    I think you could be right about the different subsets and XMRV. My feeling is that I won't test positive for XMRV and I am definitely not one of the sickest people when it comes to CFS. I would classify myself as moderately ill. It will be interesting to see how this plays out over the next year or so.
  19. fight4acure

    fight4acure Member

    I appreciate your candidness, and your ability to tell us that we're discussing a few different things on here. I haven't read much on XMRV, but so far it is confusing. New discoveries of viruses being involved in people with CFS is also confusing.

    As for my thoughts that I'm contagious, I'm not afraid to kiss anyone. Maybe it sounds sort of odd, or sort of lacking in values, but I believe that the more people have this, the faster we're going to get a cure or better treatment. If I was a bad girl I'd try to kiss all of the doctors and researchers... but I better stop thinking like a bad girl, lol.

    Fight :)
  20. MamaT1967

    MamaT1967 New Member

    I am so scared that I will test XMRV negative, where would I go from there? The nuthouse? Although I have that fear lingering in my head I am fairly certain I would test positive. That being said, from day one I have felt that whatever it is that I have, it is contagious. I keep my toothbrush separate from the rest of the family and I don't share food/drinks with anybody, just things of that nature that I am very aware of. There are a few Dr.s that I would like to donate blood to, see if they would take back their ridiculous remarks, comments or ideas they have offered me in the past. I am very sure that they would never accept my donation offer, for fear of getting sick, even though they would never admit that this is a "real" illness.

    Where was I? Oh yea, there are germs/viruses that we come across regularly, not everybody will get sick, but some do. There has to be some trigger for those of us that are not so lucky or some defence for those that are lucky and don't get sick. Like EBV or HHV6, I think I read somewhere that pretty much every person will test positive for their antibodies, so they were exposed to the virus at some point, but not everybody will have symptoms or illness from them.

    What scares me also, is the first time I had mono(had it 2x, at 11 years old and 14) the docs initially thought I had leukemia, after lots of testing was told it was "just mono". I know it wasn't leukimia, I'm 42 now, but I've read that so often PWC have some form of cancer. I have had stage 1 and stage 0 melanoma in the last year and 2 masses being monitored in chest. Sometimes I feel like docs just dismiss symptoms I have because I have CFS, I am not a hypochondriac, but I want every symptom I have/get thoroughly checked out. Not just be told, "it's just CFS/fibro", don't worry about it.

    Sorry I went on a babbling rant, it just comes pouring out sometimes.
    P.S. If you can't follow/understand my rant: drink 4 shots of vodka, turn in circles for 30 seconds, then stand on head to read my will all become clear then!!! LOL!