The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Should XMRV be called HIV-X?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by LJS, Aug 4, 2010.

  1. LJS

    LJS Insert Witty Comment Here

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    We all know what a difference the name of a disease makes in the public view of it's severity, when I tell people that I have CFS they nod there head and you can tell they are thinking "yeah okay, we all are tired" but then when I tell them I have tested positive for a virus in the same class as HIV there eyes open wide.

    Dr. Alter from the NIH called XMRV "HIV-X" in his slides and I have been thinking if the media started calling XMRV HIV-X it would be taken even more seriously by the public.

    What are you guys\gals thoughts; good, bad idea?
     
  2. Melodie

    Melodie Guest

    I wondered what Dr Alter meant by "HIV-X" as it was under "Future threat to Blood Supply" and described as "The next really bad one". He had listed XMRV under "Unscreened Threats" so I wondered if HIV-X was a hypothetically yet to be discovered mutation of HIV. If HIV-X has already been discussed elsewhere and established as an alternative name for a retrovirus in the XMRV family I am obviously on the wrong track.
     
  3. SOC

    SOC

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    Bad. It has similarities to HIV, but plenty of differences, too. It's an entirely different genus of retrovirus -- HIV is a lentivirus, XMRV is a gammaretrovirus. I doubt we need to make people scared of us at this point.

    Can't you just say you have a retrovirus? Or say you have XAND? Or my favorite is , "I have an idiopathic neuroimmune disease." That's usually enough to shut them up and describes the symptoms better than "CFS".
     
  4. SOC

    SOC

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    That's the way I read it, too. I don't think you're on the wrong track.
     
  5. acer2000

    acer2000 Senior Member

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    I think he just meant "the next really bad thing" - in the general sense. But who knows...
     
  6. Mya Symons

    Mya Symons Mya Symons

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    What about XLRV

    As I understand, XMRV is a retro virus that weakens the immune system; however, it behaves differently then HIV and replicates differently. It might be better if it had its own unique name. I could be wrong, but wasn't XMRV also called XMLV-Xenotropic murine leukemia virus? I don't think the name XMRV alone is strong enough. What if it is renamed XMLRV or XLRV for Xenotropic Leukemia Retro Virus. I think if it is indicated that not only is the virus a retro virus, it is also a Leukemia related virus, people will stand up and take notice.

    (Perhaps the murine part in the virus name should be left out. Somehow, indicating the virus possibly came from a mouse, makes it seem less severe then it is.)

    Question: Did they take the Leukemia related part out because later they found it not to be true?
     
  7. August59

    August59 Daughters High School Graduation

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    I just went back through and read that slide presentation and I don't think that's what he meant, as is XMRV is HIV-X. Now, the first time I looked at it I thought the same thing and re-read and re-read and just did it again to make sure and I still don't think that is what he meant. I could be wrong becasue I have been in a bad spell of brain fog lately. Was the slides linked on Phoenix Rising? I assumed they were, but I had picked mine up somewhere else by pure accident.
     
  8. August59

    August59 Daughters High School Graduation

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    I would think at some point its name will change somehow because haven't they already a few different strains of the XMRV as compared to the original?
     
  9. Stone

    Stone Senior Member

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    I still think consideration should be given to the name XMRV-AIDS, since they don't call AIDS just "AIDS" very often these days, they call it "HIV-AIDS". So why not XMRV-AIDS? It makes a clear distinction between the viruses, and the general public understands that AIDS stands for Acquired Immune Deficiency Syndrome, which this clearly is (assuming XMRV turns out to be what we think it's going to turn out to be) although, I wouldn't mind a bit dispensing with the word "Syndrome". On the other hand "syndrome" just might be appropriate, since there are potentially many different ways this disease manifests in different people, causing different diseases (potentially), so if 'syndrome' truly ought to stay, then so be it. I like XMRV-AIDS better than XAND, but for some reason, the scientists who decided on XAND didn't call me and ask my opinion. Maybe XAND could be what you call it when a person is XMRV positive, and if they happen to have for example, autisim because of it, it could be called "XMRV-Autism", and if you happen to have ME.CFS from it, it could be called XMRV-AIDS. There will be a bit of a learning curve with the public, just like we went through when HIV-AIDS was in the early stages of research and discovery when the name changed several times. Then there's the possibility of calling it "XMRV-ANIDS" or "ANIDS" as in Acquired Neuro Immune Deficiency Syndrome. Just some ideas I've been kicking around.
     
  10. caledonia

    caledonia

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    If/when XMRV is found to cause several illnesses, then we will probably be stuck with XMRV-cancer, XMRV-CFS, XMRV-autism, etc.
     
  11. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    HIV-X - A very bad idea. Get rid of XMRV for a start.

    I think that you would find the concensus of advice from PR savvy people to be that associating ME/CFS with HIV in any way
    IS A VERY BAD IDEA

    I agree that we need to have an appropriate name for this group of illnesses, but as yet, nothing I've seen suggested really does the job.

    Unfortunately, we are currently saddled with the name XMRV for the virus, which when you think about it, isn't actually a good name at all. It was a "stopgap" name, (reflecting it's genetic similarity to Murine Leukemia virus) which, because it abbreviates to such a catchy acronym, has regrettably stuck. Shortening it to "X" anything (i.e. xenotropic ______ or HIV -X) - is meaningless.

    Given our limited (best guess) knowledge of what this virus does and following the norm of naming viruses to reflect what they do (& the species they infect) gives us something along the lines of :
    Human Neuro-immune Dysfunction Virus or HNDV
    Time will tell whether this is actually an appropriate name.

    Perhaps it would actually be better if it was named after the people that discovered it - Bob Silverman & Eric Klein
     
  12. Daffodil

    Daffodil Senior Member

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    HTLV is much more similar to XMRV than HIV is....HTLV can also cause cancer and neuro immune illness, and is more tissue-bound like XMRV. i think HIV is a whole different ballgame. well sort of.
     
  13. taniaaust1

    taniaaust1 Senior Member

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    ohhh crap.. i really hate that thought. XMRV-CFS . Wessely and others would love that idea.
     
  14. Daffodil

    Daffodil Senior Member

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    they keep saying that XMRV might be easy to make a vaccine for because it doesnt mutate much, but i wonder how easy it will be because they havent come up with a vaccine for HTLV yet and they must have been trying...its endemic in many parts of the world.
     
  15. anciendaze

    anciendaze Senior Member

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    HIV is a considerably different beast. The quantitative difference is that it has 9 genes while XMRV has only the three needed to form capsid, envelope and reverse transcriptase - the minimum requirements for any retrovirus.

    After looking at some old research with new information in mind, I'm leaning toward the idea that XMRV is subject to recombination with other concurrent infections. This can be expected to generate an entire class of potential pathogens. My guess is that XMRV will retain its name, for historical reasons, but the class will get a new name beginning with X.

    Incidentally, a radiologist who compared the numerous scattered punctate lesions on the brain revealed by MRI scans of CFS/ME patients with those seen in AIDS patients called this illness "AIDS minor" in 1985. Some very sick patients with CFS/ME meet all diagnostic criteria for AIDS except the presence of HIV.
     
  16. muffin

    muffin Senior Member

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    Hiv-x?

    NO, NO, NO AND NO!!! Was that too Subtle?

    For those disesease that WPI thinks may be caused by XMRV, they seem to be using the term "X associated neuro-immune disease (XAND)". Until the different diseases that are caused by XMRV are spliced out and given their own XAND type names, I plan on using the term that WPI came up with.

    Which leads me to the next issue: I think that WE should rename the damn disease from CFIDS/CFS to anything else. ME is fine with me. XAND is fine with me. Peterson-Cheney-Mikovits is fine with me. Anything but CFS or CFIDS. Who gets to decide what the name is? The insurance companies? I don't think so - NOT this time around. WPI can lead, and by rights should be the one naming the XMRV related diseases/disorders, so I go with XAND.

    I would stay as far away from HIV as possible. We have more than enough problems with what we already deal with and do NOT need that HIV association simply because they are retroviruses. Please don't say HIV, it will do more damage to us than we need. Another different type of Retrovirus is bad enough but do NOT associate it with HIV.
    Just my opinion.
     
  17. boomer

    boomer Senior Member

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    If the WPI suggested XAND then XAND it is. Do you pronounce that as in zand or x-and?
     
  18. Ash

    Ash aka @smashman42 'SortaDerpy' on Twitter


    HNDV, I like it - XAND sounds like sand.
     
  19. Stone

    Stone Senior Member

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    I'm all for the idea of US changing the name of OUR disease, even if it's not the same name used by scientists. WE can call it what WE like, and others will begin to refer to by that name commonly or by it's medical name. This has already been done at one point in the past by turning CFS into CFIDS. Now you see our disease called CFIDS quite a bit. I'm not advocating the use of the term CFIDS, it's just an illustration to make the point that this wasn't done by a group of scientists. Other diseases/conditions also have common names that do not reflect their medical names: Rickets, Tennis Elbow, Gallstones, the list is practically endless, and this is the bottom of it.

    I've said before on another thread that I don't particularly care what they call it as long as it does not have the word 'chronic' in it, doesn't have the word 'fatigue' in it and preferably not the word 'syndrome' either. I don't mind a bit having our disease associated with HIV. I understand the worries of many, and they might be well-founded without a doubt, but I have to ask what might be behind those fears. Is it because people will fear that we are infectious? Well what if we are? Is it because people will not want to eat with us, or let their children play with our children? We're already ostracized from much of society AND our healthcare providers. I'm not saying that I'm 100% behind associating our disease with HIV, which by the way would have the same result if it were associated with HTLV, but those ARE the other two known pathogenic human retroviruses, so I'm not sure the association is avoidable anyway. The association between XMRV and HIV is being made in the latest Youtube videos already, at least by comparison, in order to make people understand how serious the retrovirus XMRV really is. Is that really a bad thing? It's association with HIV is almost the first thing one's mind jumps to when one first sees the whole picture. Again, I'm not sure it's avoidable in the end. It is infectious and it is a retrovirus.

    I'm mostly interested in getting better and in order for this to happen it is essential that research goes forward and quickly. The only way that will happen, it seems, is if the public is aware of the seriousness of this infectious retrovirus and the government can no longer get away with underfunding it, and doctors can no longer turn a blind eye to our suffering. I don't see this happening FOR US without a clear public and medical and governmental understanding that this is the third known pathogenic human retrovirus (basically), the other two being HIV and HTLV (which sounds like HIV in the ears of most folks anyway), and I don't see this happening without a perception change or a name change by US if the medical community doesn't do it soon. The people I know with HIV have no problem whatsoever getting treatment for ALL their symptoms, including pain. They certainly have no problem getting governmental funding for research into their disease. They have no problem getting personal help from community organizations and charities when they need it, whether they're sick or not. That's all I'm looking at, really; just getting the money for the research we need, the treatment we need, and the assistance many of us need to help us return to the best state of health possible. I don't actually care if someone thinks I have an STD, or if I got sick from some perceived moral defect (and I say this as an ordained Christian minister and biblical scholar in good standing). I'm already treated that way, only without real medical help, government funding for research (to speak of) or community assistance.

    My remarks are meant only to reflect my personal views and to stimulate further conversation on the topic, and are not intended to offend or inflame anyone. I sincerely hope they are received in the spirit they are offered.
     
  20. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    Virologists don't do PR

    The WPI may be good at virology, but their PR to date has been pretty hopeless at times.

    Think about what XAND actually stands for (Xenotropic Associated Neuroimmune Disease) .......... it's completely meaningless !

    Please, let's get away from the "temporary" / "make do" name for the virus of XMRV (which describes only what virus it's similar to) and call the virus by a name which describes what it actually is and does.

    TGOP :D
     

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