1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

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. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    No it doesn't! HIV refers to the organ system involved - immunodeficiency virus. Maybe they should wait until they figure out what XMRV is affecting. Dr. Mikovits has research stating its affecting the immune system..... Human immunodeficiency gamma virus==HIGV - or HIGR - not great but better than HGRV...theres gotta be some better acronym out there.
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    I like HGR pretty much - nice and simple.
  3. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    If it is renamed after Dr Mikovits, ie Mikovits Disease, (as someone has so rightly suggested) it becomes 'MD' for short - we'll all be MD's!!
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    I think we should make a list of possibilities and vote on them. Maybe we can come with something a bit more catchy.


    HGARV - Human gamma retrovirus
    HUGAR
    ???

    They sure didn't have an easy list of letters to work wit - I'll give them that.
  5. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
    Likes:
    8
    myrtle beach, s.c.
    HGR sounds better, isn't retrovirus one word anyway?!!!
  6. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
    Likes:
    8
    myrtle beach, s.c.
    If we went with a dr., Silverman's disease sounds better, no offense to Judy.
  7. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    Hi Cort - do we have any idea who the other scientists were who were invited/attended this first WPI Scientific Symposium? Do you think the WPI might make the list available?
    It would be great to know who was involved at this exciting and early stage.
  8. Gemini

    Gemini Senior Member

    Messages:
    376
    Likes:
    194
    Or maybe HGV.... human gamma virus

    Gemini
  9. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    *silvermans
    *HGV
    I like those.:victory:
  10. leela

    leela Slow But Hopeful

    Messages:
    2,369
    Likes:
    2,718
    Couchland, USA
    Oh good one! Hadn't even gone there with it!
  11. Sasha

    Sasha Fine, thank you

    Messages:
    7,548
    Likes:
    5,572
    UK
    In the UK, HGV = Heavy Goods Vehicle.

    We think we're a laughing stock now - wait til we're got HGV...:eek:
  12. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    Has anyone suggested Silverman-Mikovits Disease? I like it just as long as people don't start calling it S&M Disease. :eek:
  13. Forbin

    Forbin Forbin

    Messages:
    224
    Likes:
    190
    Not only is "retrovirus" one word, but "gammaretrovirus" is also one word.

    Human Gammaretrovirus Disease? HGD?
  14. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    There are too many people attached to this discovery to name it after them. Don't forget Klein and the guy who ran the lab, also Annette and Peterson. Too many. But we can remember them.
  15. Gemini

    Gemini Senior Member

    Messages:
    376
    Likes:
    194
    Agree...this time around we should weigh in with our choices!

    Gemini
  16. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    26
    I kinda like CARV (Childhood Adversity Residual Virus) with an attendant disease entity of CARVE (Childhood Adversity Residual Virus Encephalomyelitis). . . It has an edgy sound to it. An an oxymoron moniker would be fitting for the schizoid body of research published so far on CFS.

    Maybe it can go on the poll. . .
  17. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    I think we should first see what comes out of the conference. It will change again at that point. Also, they are trying to name the disease based on science, which is needed to immediately communicate to doctors what this is. I would rather the name indicate to the medical profession the significance of this finding first.
  18. d1nFL

    d1nFL

    Messages:
    2
    Likes:
    0
    HGRV... it's not as HaGgRaVating as CFS!
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    It's always been obvious that the name would be changed (and may change more then once.. who knows this may not be the last of name changes).

    I think the new name is far easier then the old one.. i have never been able to remember what the X in XMRV means everytime i get asked. I bet most here wouldnt remember off their heads what that X means.

    Human Gamma Retro Virus will be far easier to remember :) and adding "associated disease" to the end is logically when it comes to refering to any disease it causes.

    Yeah HGRV isnt as catchy looking as XMRV, but at least i will stop looking like a dunce everytime someone asks me what XMRV stands for.

    We should all be happy that Wessely and cobuddies havent tried to name the new virus CFSV .
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,726
    Likes:
    4,564
    Sth Australia
    Im actually finding it a bit rude.. like as if a parent named a child.. and then all the childs relatives go ... "i dont like that".

    This is what i feel is being done here. Where is the appreciation and gratitude towards those who are trying to do the right things for us. Why arent they getting support for their choices? Im sure they dont want to hear that patients are unhappy with the name they are choosing to call the virus.

    I personally think the patients shouldnt be trying to name this illness.. if we ended up naming it, just imagine the credilitiy that may have when our already disbelieving GPs and others discover that the virus was named by patients themselves rather then by science.
    (i dont doubt the badder side of the media would talk about it) It may make it even slower for it to be accepted (just like we arent already accepted due to a bad name). Since when do patients usually name their own illness? (we need to become more like normal accepted medical things). I dont want to see XMRV or whatever they are going to seriously call it, be tainted by such a thing.

    (eg could XMRV become that illness which is thought by doctors as something the patients have mostly made up.. after all they even named it themselves).
    ........

    **thumbs up for a very scientific sounding name named by the researchers and those scientifically involved and who backs us**
    A name there isnt medical controversy about.
    ........

    It concerns me that patient groups pulling all kinds of different ways on the name issue, could end up having the consequence of others stepping in to get it named and it may end up being a name we truely hate. eg say if Wessely group ended up naming it .. chronic fatigue syndrome virus CFSV . CDC's and Wessely school power, should never be underestimated.

    I think it is needed to back a scientific name (which may end up being changed again anyway due to what else they find out about the virus). Support the medical ones who are backing us.

See more popular forum discussions.

Share This Page