XMRV virus

Discussion in 'Fibromyalgia Main Forum' started by hensue, Nov 1, 2009.

  1. hensue

    hensue New Member

    if you read all pages it says the cancer institute is working on a vaccine for xmrv. That quest and Lab corp are dealing with WPI on drugs for virus.

    Just thought I would share

  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    How nice. I like the angle on this article. I would have loved to have been there when Mikovitz was in the lab and noticed the virus in sample after sample after sample. I imagine she just sat down in her chair and imagined the possibilities. As they said, this has changed the world. It certainly has changed our world.

    I hope WPI continues to be open in sharing everything with others. Suddenly, drug companies and labs care. (I don't mean that in the warm and fuzzy way.)

    I'm not interested in getting tested. I am 95% sure I have it. But I would be interested in being a guinea pig for the HIV drug (or similar) treatment.

    We have a university / research hospital in Birmingham. But as far as I know, they have not been doing any research into CFS. But they are big on research into HIV. With all the interest that virologists and others have in XMRV, I wonder if any of them have contacted WPI. I would hate to call randomly at WPI and try to find out. But if there is a study to be done here, I sure would like to be a part of it.

  3. LadyCarol

    LadyCarol Member

    You must have a XMRV test to verify if you have the XMRV retrovirus and/or antibodies, there is no point in being 95% sure. Also there is no point in trying out any drug on the assumption you may have the XMRV retrovirus or a virus without some kind of positive test result to justify such an action.

    The typres of drugs we are talking about can have side effects, some of which can be horrible, and furthermore there is a risk they can actually make someone more ill than they already are.

    I would have thought it better to be tested for XMRV and to have a negative test result rather than a positive result. I am certainly not looking forward to hearing I have the XMRV retrovirus, give me a negative test result anyday.
  4. AuntTammie

    AuntTammie New Member

    WPI actually says on facebook that they do want people to contact them if they are interested in participating in future studies and/or donating blood/tissue etc

    I don't remember for sure, but I think that they said to inquire vie their email....that is: info@wpinstitute.org

    I do know that if you post anything on their facebook site, they will respond fairly quickly and they are very friendly and helpful
  5. TigerLilea

    TigerLilea Active Member

    Without getting tested you have absolutely no way of knowing whether you have XMRV. Being 95% sure you have it doesn't mean that you do.
  6. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Well, I know I have CFS. And 95% of people with CFS have XMRV. (based on initial study)

    Of course, if I get hooked up with a study then they will test me before trying a treatment. But if I am not in the study, and no treatment is available to me, then what is the point in getting the test now, especially if I have to pay for it myself (company in the Carolina).

    Also, in the CFSAC, the retrovirologist warned against that test. (hmmm, I wonder if the company knows about that.)

    I will contact WPI Tuesday (I am busy Monday) to see if they have been contacted by a researcher in Birmingham.

    In the mean time, I am focusing on supplement treatment of immune system and getting the all important sleep, and of course, pacing.

  7. AuntTammie

    AuntTammie New Member

    I think that WPI was one of the places that was talking about possibly doing a study using the HIV drugs & that is what you said you were interested in......that's why I mentioned that they are looking for more people.....also even if they aren't doing that, they may very well be able to point you in the rt direction and they do seem very open to all sorts of questions
  8. ladybugmandy

    ladybugmandy Member

    i am PRAYING i have this virus. if i don't, i will be crushed. i am so incredibly ill and being back at square one with no treatment possibilities would kill me.
  9. spacee

    spacee Member

    Is there are treatments that are going to be coming out and I have to know what I have.

    Of course, I am one of the oddballs that tested positive for "something like" HTVL 1. So, I got retested for that today.

    In a few months (as Dr. Klimas recommended) I will get tested for XMRV.

    My doc said that he would order any med recommended and he was happy for me that they have finally found a cause. Wasn't he sweet.