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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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News from WPI symposium: Name change to be proposed for XMRV

Discussion in 'XMRV Research and Replication Studies' started by richvank, Aug 19, 2010.

  1. New name not necessary - we already have a good one.

    "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."
    Joseph J. Burrascano Jr. M.D.

    WTF is Burrascano playing at? We already have one clumsy name for the
    actual virus in the term "XMRV".

    And it's very presumptuous of him to state that "the new name IS . . "
    when he should say "the PROPOSED new name could be . . . "

    As for The Disease of A Thousand Names - that makes it now 1,001.

    We simply don't need yet another new name. We have a currently-used,
    popular, easy-to-say, and accurate, name for the disease, which most
    people outside the USA are familiar with. It's "M.E." This is its original
    name as used in the USA and even then preferred by patients.

    Just drop the bastard term "CFS" from any future writings.

    Why want to change it? Why propose an answer to a problem where no
    problem exists?

    Burrascano is a well-respected Lyme Disease doctor, but he has had
    nothing to do with M.E.

    Lyme is an infectious disease caused by a bacterium, Borrelia, related
    to Syphilis, with many strains, which can lead to a symptomatology which
    may imitate virtually any other disease. Especially those of the nervous
    system.

    M.E. is an infectious disease caused (apparently) by a virus, XMRV, related
    to the HIV of AIDS. It affects the immune system and mainly the nervous
    system.

    The symptomatologies of these two separate diseases can overlap or be
    identical in some areas which can make a clinical distinction
    difficult. And of course some people may have both diseases. Roll on
    better blood tests!

    I like the term Human-Associated Gamma-Retrovirus Infectious Disease -
    or HAGRID for short - as per the character in the Harry Potter films.
    At least you can pronounce it and remember it.

    You may find you have to leave room for subsequent discoveries of
    related viruses, perhaps causing other neuro-immune diseases - like
    MS, GWS, FM ad inf. Of course they could be simply called XMRV-1,
    XMRV-2, etc. The term HGRD is not good as it could apply to any of a
    number of these diseases.

    wingfingers
  2. Jackofit

    Jackofit

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    Dr Yes is right!

    Dr Yes, thank you! That's the kind of straight talk I like to hear, HGRAD is patently absurd and doesn't make sense in regard to the diversity of gammaretroviruses. It doesn't make sense and there must be more to this than we are being told. I don't even know who that Burroscana is but I know his spin doesn't make sense and why he is the spokesman for this unofficial announcment?

    Dr Yes if you can elaborate more on the science of retroviruses and this strange political development that would be a good thing.
  3. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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  4. calzy

    calzy Senior Member

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    :confused: Really People.....I dont give a s#@t what they call it..get us fixed:Retro mad::eek:
  5. Kate_UK

    Kate_UK Senior Member

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    That seems reasonable.
  6. Jackofit

    Jackofit

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    Wingfingers I agree totally that ME was fine just the way it was for decades before CDC came along and spun a story about CFS which has caused us untold grief ever since. Some people are saying that the retroviral cause was a factor in the change to CFS which has never described the disease we suffer from.

    XMRV is just the name of the retrovirus and that doesn't affect the name ME, but to ignore that and change that to the weird HGRAD is very strange.
  7. bullybeef

    bullybeef Senior Member

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    I understand where you're coming from eric, but I have known my GP since I was a child. She's looked after the majority of my immediate family, and she is very empathic and sincere. She just probably thought I wasn't in a HIV risk category. I wasn't sick at that time, and was a typical twenty something, where I rarely stayed in long standing relationships. I was actually shocked that the person I was seeing at that time asked me to be tested. No one else ever did, not even my wife.

    I did speak to my friends and family about this test at the time, and many of them suggested the same as my GP.

    My GP believes that XMRV maybe proven the cause of ME, and although I have stated my worries that the CDC are playing silly beggars, as they did in the 80's and 90's, she's confident that the science will win through. She a damn sight more confident than my consultant whom is completely dismissive of XMRV. The last time I spoke to him, he quote the regurgitated BMJ Plos one study as though it was gospel.

    I certainly know whom I trust at this time.
  8. Jackofit

    Jackofit

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    They did in 1987 and that is why the CDC changed the name to CFS. Have a look at CFSCentral blog, topic: Commotion in the blood, timeline and bloodline, under 1987!
  9. bullybeef

    bullybeef Senior Member

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    I am surprised they haven’t discussed a acronym that you can say, like AIDS. I can understand HGRV instead of XMRV, but why not something like GRAID or GAID rather than HGRAD? I really believe associating this with AIDS isn't a bad thing. It is 23 years since the AIDS advertising campaign, and for many people alive now, it is going to be completely new.

    The main reason for the AIDS campaigns were to promote safe sex, and the most promiscuous age groups are probably 18-35 year olds. So, any new campaign adverts would be to target to a completely new generation.

    Many of us have suffered from an ignorant type stigma for years, and I doubt the general public finally being aware of our condition, whatever its name becomes, could be any worse than that.
  10. eric_s

    eric_s Senior Member

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    I don't know, i'm not a doctor, but i always thought one should get tested for all sort of things before you do something unprotected.
    And an insurance company would never know that you've taken the test. Of course, if you want to sign a contract you will probably have to declare what illnesses you have and there a HIV+ person would have to declare that. But i don't see how a doctor would prefer that HIV+ people get cheaper life insurance over HIV+ people getting diagnosed and treated and not infecting others?
    Well anyway, if she's a good doctor, it's good you have her.
  11. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Totally Calzy! Was just thinking the same thing. Can't get my head around all these initials.
    (But just as long as its not CFS!)
  12. grant107

    grant107 Jean

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    I like HGR. It is simple and easy like HIV. Many illnesses are named for their discoverer, so it could be called Silverman disease after Dr. Silverman at the Cleveland Clinic.
    I'm just so glad I no longer have to say I have cfs.
  13. shannah

    shannah Senior Member

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    I'm a bit puzzled by the same thing.

    Also:
    HIV = Human Immunodeficiency Virus
    AIDS = Acquired Immune Deficiency Syndrome
    HTLV = Human T Lymphotrophic Virus
    HGRV = Human Gamma Retro Virus
    HGRAD = Human Gamma Retrovirus Associated Disease

    HGRV & HGRAD sound just a little too blatant for my liking. Every time someone asks what it stands for you'll be very blatantly announcing you're infected with a retro virus. No sugar coating or downplaying that term. Further room for stigmatization and having people keep their distance. Why does it have to specify retrovirus when the others don't. If this sticks, I can see myself making up my own term. Anybody else have the same feelings on this?
  14. VillageLife

    VillageLife Senior Member

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    A lot of people are going to call this the ME virus for a while, or maybe the CFS virus. I think its important they pick a strong name and fast!
  15. bullybeef

    bullybeef Senior Member

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    I doubt many people even know what a retrovirus is.

    When the XMRV news broke last year, I phoned NHS direct, and I spoke to a NHS nurse and asked her what their advice is on this new retrovirus XMRV. She replied, what's a retrovirus?!
  16. VillageLife

    VillageLife Senior Member

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    oh noooooooooo!!!!!!!!!!!!!!!
  17. capemark

    capemark

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    How about HG-RAD - sounds like a radical Hi-definition format!
  18. bullybeef

    bullybeef Senior Member

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    Mmmm...I wonder if I am XMRV ready?! ;):D
  19. Seeker

    Seeker

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    DE
    Thanks LJS & others who've commented on this thread that they also have Lyme. I tested + for Lyme (PCR & culture, making no antibodies detectable on Western blot), both kinds of ehrlichiosis, babesiosis, bartonella, EBV & CMV (no XMRV test yet). Had near total remission for 4 yrs then relapsed Feb 2008 after ~6 mos of prolonged, unavoidable stress. Many in my family have symptoms (eg, son had fatigue for yrs - but he also had EBV & babesiosis, known to cause fatigue; Dad's beaten prostate cancer, etc) consistent w/XMRV. Just really glad everyone's sharing info:)
  20. dannybex

    dannybex Senior Member

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    Agreed...

    Completely agree. Keep in mind that many people on this forum alone tested negative yet were/are (in some cases) just as severely disabled as those who tested positive. This fact is ignored repeatedly...

    LOL. :Retro smile:

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