News from WPI symposium--Name change for XMRV to be proposed

Discussion in 'Fibromyalgia Main Forum' started by richvank, Aug 19, 2010.

  1. richvank

    richvank New Member

    Hi, all.

    I just received the following message from Dr. Joe Burrascano. I checked with him, and he responded that this information can be made public. I don't have any additional information about this, so won't be able to answer questions, but it sounds like a major development, and I think people here will want to know about it.

    Best regards,


    Hello all from Dr. B.
    I just returned from the first official scientific symposium of the Whittemore-Peterson Institute on the topic of XMRV.
    We formed a working group to be in constant touch and we plan to meet regularly because advances are coming so rapidly.
    Big news that everyone should know and adopt is that we have proposed a name change for the virus.
    This virus is a human, not mouse virus, and it is the first and so far only gamma-retrovirus known to infect people. Also, it is clearly not an "endogenous" retrovirus (one that is present in all genomes due to ancient infection).
    Because of all of this, and because of the desire to begin on the right track, the new name of the virus is HGRV- Human Gamma Retro Virus. The illness caused by this infection is named HGRAD- Human Gamma Retrovirus Associated Disease.
    We plan to announce this at the upcoming NIH retroviral conference this September.
    Definitely stay tuned- the volume of new and important information about this virus and its disease associations is increasing rapidly and in my opinion should be a concern to every patient with chronic neuro-immune diseases, including those with chronic Lyme.

    Joseph J. Burrascano Jr. M.D.
    Water Mill, NY, USA
  2. mbofov

    mbofov Active Member

    for keeping us posted. I won't ask how it went from being called a mouse virus to human (I probably wouldn't understand anyways) --

  3. KnightofZero

    KnightofZero New Member

    Great to have Dr. B's perspective and reporting on all of this, and that he is going to be at the conference in September!
  4. richvank

    richvank New Member

    Hi, Mary.

    XMRV stood for xenotropic murine leukemia virus related virus.
    As you probably know, murine means involving mice.
    XMRV was not found in mice, but in humans.
    It has a genome that is similar to the retrovirus that causes murine leukemia.
    This name change reflects the fact that it is actually found in humans.

    Now, another question would be how did this virus get changed from the one that affects mice to one that affects humans? That's also a very good question, to which we may never get a good answer. Did this just happen by a natural process, viruses inside the same organism swapping some genetic material? Or were humans involved, either doing gene therapy research, or developing vaccines, or even biowarfare research? Mice are very ubiquitous creatures in biomedical labs.

    Best regards,

  5. mbofov

    mbofov Active Member

    You made it understandable. I had assumed all along there was some connection with mice because that's what everyone said (and the name of course), but did not realize it was not actually found in mice, just similar to a mouse virus. So of course the name was misleading.

    That would be a real detective story to find out its origins ... I wonder if we'll ever have the capability of tracking it down? I read a book several years ago about the AIDS virus being tracked back to vaccines developed in Africa using monkeys' blood.

    Best wishes,

  6. AuntTammie

    AuntTammie New Member

    I wonder if this will feed into the process of distancing CFS from ME, as the lovely CDC is now trying to do.....I know the name change here is not related to the CDC, & I am all for accuracy, so I am not saying this to knock the name.....however, I am still worried that there may be PWCs out there who do not have the retrovirus and that they are going to be left behind and even more trapped in the CDC's b/s psych definition

    personally, I think it should all be called ME, as it was originally anyway.....and then if there are people with the retrovirus and people without who all have ME, they could be termed HGRAD positive ME and HGRAD negative ME
  7. victoria

    victoria New Member

    I hope that this may prove to be the underpinnings of many chronic debilitating infections, who knows!? what you wrote... I too wonder what the reliability of testing will be. The real difficulty may be for those who don't show up + on the testing; in fact, the higher the reliability in some ways may make it harder for those who may have it but for some unknown reason(s) may not show up positive..

    I have no idea what the reliability is for testing for HIV (as an example); is there room for a 'clinical dx' with HIV?
  8. gapsych

    gapsych New Member

    Is this committee specific to WPI? I would be very interested in who else is on the committee and what are it's goals.

    Whether warranted or not, Dr. B has a rather controversial past.

    What concerns me is if he is seen in this light, especially with the IDSA definition, guidelines and treatment of Lyme recently being upheld, I wonder if in the long run his presence will not help the credibility of the CFS/FM/Lyme community as it pertains to XMRV?

    We need to be taken seriously and that means we need the backing of the science based profession..

    As much as I hate the politics of these type of things, realistically, this is how the game works. I mean that figuratively, not literally.

    I know it is a delicate balance with matters like this.

    I don't think I am being picky here but trying to see the whole picture and what consequences might become apparent down the road.

    I would like to hear your take on this.

    Thanks for the information.

    [This Message was Edited on 08/20/2010]