why is XMRV never on TV?

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Nov 13, 2009.

  1. ladybugmandy

    ladybugmandy Member

    My mother always asks me, if this new virus is such big news and CFS affects millions, why is it never talked about on TV? she watches CNN all the time and it has never even been mentioned. Isn't that odd?

    Other studies are regularly talked about. Since the blood supply could be affected, one would think XMRV would be very newsworthy.

    Wonder if they don't want to start a panic?
  2. TigerLilea

    TigerLilea Active Member

    It's probably because they are just in the very beginning stages of research.
  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I wondered the same thing. And the answer from Tiger may explain this.

    But we can try to change this. Have you contacted CNN?

  4. hi all,

    i must admit that im very worried that the XMRV and ME/CFS viral connection,might be released to the public (on tv and such or even doctors surgery),and i say this because....

    i work in a school (as a cleaner),and if some of the other cleaners knew about this recent information as regards my illness,then i,ll have major problems with bullying (done to me),thats how things work at my work place.

    imagine that the results of the XMRV virus are that its sexually transmitted.and my work mates get a hold of that information.they would drive me out of my job.so we dont want it to be like this.ive been married for 21 years and always been faithfull,never cheated on him.

    i caught glandular fever from my young son all those years ago (from his nursery).also i was made to have a second oral polio vacine after giving birth to him in 1990.those two things are what comes to my mind when i first got ill with this stuff.

    the only other thought is..did my mum catch a virus while i was in her womb in the 1950s,and she spent a week in hospital with suspected infection on the ovary and kidney trouble?.

    i dont want it to be a sexual transmitted thing,else we are then marked at work arent we?

    my head is all over the place at the moment,but im remaining focused and strong,i have to do.

    working and having M.E/CFS,and fibromyalgia,is extremely hard for me,but being bullied at work will most probably tip me over the edge.i just dont need it.

    take care all,love fran.
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Considering it occurs in clusters of people who don't share body fluids, I am concerned the message becomes that it is transferable through the air.

    Then we will truly be ostracized.

  6. TigerLilea

    TigerLilea Active Member

    Isn't it too soon to be contacting the media? The retrovirus was discovered and it has been reported. There really isn't anything more to report at this time and probably won't be for a few years until they finish doing the research. I would rather they wait until they have definitive proof that XMRV and CFS are related; they know whether it is the cause or just another symptom; they know how it is transmitted; and, they know how to treat it.
  7. spacee

    spacee Member

    I know I didn't get it that way.

    But the reason it may not be on the evening news is the war and the swine flu. Not to mention the recession

    It was in the New York Times online newspaper again this week with a pic of the Whittemore's daughter.

    In another place I read that they have actually known about this virus since 2006 and had closed door meetings at the NIH about it but not in connection with CFS.

    I am concerned that no one will want anything to do with us.

  8. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Tiger, I think Spacee is talking about the public stigmatizing us the way AIDS is, if it is found to be primarily through sexual transmission.

    I don't think it is too early to have news coverage. The relationship is there. Most all other viruses related to CFS are common in other people too: EB, HHV-6, etc. But XMRV is not common in healthy controls, verified by two labs, NCI one of them. The prostate cancer study and CFS study showed almost the exact percentage of healthy controls with the virus, which is very amazing.

    Another reason this is news worthy now is because of the concern over the blood supply.

    Another reason this is news worthy is that it takes away the psycho babble connected to the disease. Even if this is not "the cause", it shows unequivocally that this is not just another form of depression.

    Another reason this is news worthy is that a private clinic found the connection in two years despite 20 years of the CDC supposed to be researching the disease.

    I have contacted a local freelance writer here in our city who reports on medical stuff. I don't know where she is published, but I e-mailed her and verified she is still reporting medical news. She e-mailed me back and said yes. She asked what the news is.

    I told her to call me. I want to do this verbally, not through e-mails.


    [This Message was Edited on 11/14/2009]
  9. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Also, different from other viruses found to be elevated in CFS patients, XMRV is a retrovirus that attacks the immune system, which makes it a suspect for causing all the other virus problems we have.

  10. ladybugmandy

    ladybugmandy Member

    i'm a little worried about this too. i am east indian.. i don't socialize with anyone from the community but they would have a field day ostracizing my mom and gossiping about me! even though i was a virgin when i got this.

    eventually, the virus will be found to be transmitted by saliva as well as other bodily fluids. i know thats how i and most people got it. if only 3.7% carry it, most of us couldnt have gotten it from our mothers.

    since it's also in a lot of prostate cancer and autism, maybe we won't be that ridiculed.

    luckily, most of the people i know seem to remain ignorant about CFS and still think it's mostly in my head - for now.

    maybe by the time its common knowledge, we will have treatment and feel better so other people's crap won't matter so much.
  11. TigerLilea

    TigerLilea Active Member

    Wasn't this found only in prostate cancers in the US? When German researchers looked for XMRV in prostate cancers in Germany they weren't able to find the retrovirus.

    I still believe we need to just sit tight until we know more about XMRV. So far they have only studied the sickest group; it might turn out that people with milder forms of CFS don't carry the virus. Or it could turn out that only those with low RNASE L have XMRV.

    I'm not bringing this up to be a downer so don't anyone accuse me of making people feel bad for feeling good. I'm just taking a realistic view of things at present :)
  12. simonedb

    simonedb Member

    I have considered this too and I dont think things could get worse for us than they have been, I think I would rather risk ostracism for a virus than for being a slacker or malingerer.
    But I dont plan on telling anybody I date about it right away thats for sure, not til I know more about it and of course said dudes.
  13. AuntTammie

    AuntTammie New Member

    with simone...."I think I would rather risk ostracism for a virus than for being a slacker or malingerer."

    plus, we need to remember that there are young children with ME/CSF (too young to be sexually active and too numerous to all have been abused).....so even if it turns out that sex is one way to transmit it, there is no way that it is the only way
  14. spacee

    spacee Member

    I think it is where I live (small town, hubby businessman) that makes me fear it. We moved here 21 years ago and since I was sick and looking perfectly well...I have not been accepted. So. I shouldn't fear it.

    Yes, I absolutely cannot wait until the medical field knows that we are truly ill. I just don't understand the German's. They couldn't find the 1991 retrovirus either. And, now, they can't find this one. And, to me, the Germans have a good medical system. I just don't understand it.

    The reason why I don't think it is just sex, kissing, ect. is that 4 friends and I got sick at the same time. There was none of that. 3 women, one man.

    It's good to "talk" about this with each other. It helps.

    Tina. I grew up in Trussville :)

  15. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Veidt, I am honored.

    Simone and Aunt, interesting point. I have had the luxury of no one insinuating to me that my illness is psychological (except an internist and my husband initially, he changed his mind within a couple of months. As for the doctor, well, I never went back to him.)

    None of my friends or family said that. I know my mother and father don't believe that. Now, do some of my friends believe that and not tell me? I don't know. Thanks to this illness, I don't have close friends I see regularly any more. And the people I have worked with never said so.

    I don't know if it is timing or what. So whatever the cause, I have not felt the emotional stomach punch of being misunderstood in connection with this illness.

    But I do know someone who has HIV. She is married. Of course, her husband knows. (Believe it or not, she married him after she knew she had the virus. He was ok with it.) But she has felt the rejection of her sister-in-law and brother. They had children that they were afraid to be around her. (She caught it from a previous husband who turned out to be an IV drug user.)

    So she keeps it a secret now. She hasn't told her father and mother in law. Even though many people get HIV through other means, it is still thought of as primarily a disease of people who are immoral.

    I would hate to have the same stigma with our illness. But honestly, I think there has to be much more to the transmission than the way HIV is transmitted. This is one of the things I will be very interested in seeing in future studies. And honestly, it ought to be easily determined.

    "Come here and let me kiss you and see if you get this virus." Sorry, I just thought of a comedy show theme centered around this whole ordeal. I am feeling a little better now.

    Back to the serious discussion. I won't mind telling people I have this illness even if it is thought to be transmitted same as HIV. The HIV people paid the price already of the world's ignorance. At least now people don't go running out of the room with their mouths covered when they meet someone with HIV.

    As the lady who owned the local newspaper and covered many of the stories and handled the advertisers, when I got sick and was diagnosed, I let many know. I discussed on the newspaper forum. But I suspect it might have hurt me when I applied for another job. After making it so public, trying to let everyone know how debilitating it can be, it was hard to convince people I could take on a responsible job, even though it was only 30 hours a week.

    Honestly though, I couldn't have done that job because of my health. It was a blessing I didn't get it, although in every other way I was a good fit and would have thrived.

    My concern is that if I continue to be public with my illness, then even if I get better, will I lose out on more opportunities. I am more of a public figure, well known.

    I can see why many in Hollywood kept it secret. I was reading in Osler's Web that so many were sick in L.A. in the film industry. The book only mentions one name. I wonder how many others were / are sick but stay in the closet so as to not lose job opportunities. I noticed many of other professions she mentioned specifically in the book she used pseudonyms.

  16. quanked

    quanked Member

    The bully website was great!
  17. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Hey, Spacee. I grew up in Trussville, too. I am now in Clay. I did the Clay News until August this year.

    Where are you now?

  18. spacee

    spacee Member

    I live about a hour from Orlando, Florida. And have been in Florida 40 years. My sons all went to Samford and my mother was alive then, so I was in Trussville alot until 2006.

    My mother would say of me "She sure can sleep!".

    She didn't subscribe to the Clay News though. She got the newspaper from her hometown and the B'ham News. (Like she had done for years and years).

    Thanks for the hard work you do getting the word out about CFS!

  19. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I grew up in Trussville, moved out in 1984. Moved back to Clay in 1986.

    Started Clay News in 2002. Closed it in August this year. I got sick in 2006, well I had been gradually getting sick for three years before. I plummeted in 2006.

    I know someone who lived in Chalkville that had CFS. She lost her house through foreclosure. Now she and her two children are with her parents in Orlando. Do you know a good CFS doctor there? She is desperate.

    Also, I see you must have gotten sick in the mid-80s. How did you end up with Strauss?


  20. maps1

    maps1 Member

    Just throwing this into the mix as I watched a video on lyme and one of the ticks first meals are mice so couldn't transmission also be by ticks or mosquitos.

    There seems to be too many children involved for it to be transmitted by sex.


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