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Okay so can we PLEASE change the STUPID name to something else NOW???

Discussion in 'General ME/CFS News' started by Stone, Jun 23, 2010.

  1. Stone

    Stone Senior Member

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    Really, are we there yet? I'm so over this stupid name, CFS. I had to try to explain to my doctor that this is NOT fatigue. Fatigue, almost by definition is alleviated by rest. This is not alleviated by rest, and therefore is NOT fatigue. It's something else entirely, and that should be obvious to all by now. Besides, for most people I know with CFS, fatigue is not even considered by them to be the feature that impacts their lives the most significantly. Many people if asked would say it was pain, insomnia, brain fog, OI, or any of a host of other things. How long till the name changes, even temporarily to something, ANYTHING else? We can simply refuse to call it CFS anymore but what would we call it? I know there's ME, which is better, but it still gives a subtle impression of being "all about me".

    If this were named after a person, as in Alzheimers, Graves, Cushings, who would it be named after?

    I'm all for the name ending in the letters IDS, standing for Immune Deficiency Syndrome, but what should come before? They don't call AIDS "AIDS" anymore, they call it "HIV-AIDS". So why not XMRV-AIDS? This is an acquired immune deficiency syndrome caused by XMRV isn't it? (I mean if this whole thing actually pans out as it appears to be panning out before our eyes today, that is.)

    Thoughts? Feelings? Opinions?
     
  2. caledonia

    caledonia

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    Actually the Whittemore Peterson Institute already came up with a name, which is XAND (XMRV Associated Neuroimmune Disease).

    I'm not sure if it's pronounced Zand or X-And. I've been calling it Zand.
     
  3. dannybex

    dannybex Senior Member

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    hmmm...

    I actually don't mind IDS, but that would to me mean Immune Dysfunction Syndrome, and then people could be XMRV-positive, or as some undoubtedly will be, XMRV-negative, within that name.

    Don't hate me Caledonia :(...but I never liked XAND. Sounds like a brand name for a deodorant ("Have you tried XAND?"), and also it seems like it would be even more difficult explaining what those letters stand for. I can also imagine people replying "You've got sand?"

    IDS, is more like IBS, something people might relate to easier...and doesn't have that dreaded f-word in it.

    And then there's always myalgic encephalomyelitis...
     
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    LOL LOL (sand)

    Tina
     
  5. Stone

    Stone Senior Member

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    Yeah, I know but XAND just doesn't sing to me. It's not necessary for it to do so, but I dunno, I was thinking of something somehow different. I certainly wouldn't complain one bit if XAND is what it ends up being officially changed to in both medical terminology and common parlance, but we've really been done such a disservice by the name Chronic Fatigue Syndrome, I really want to see 'them', whoever 'they' are, get the name really right, and quite frankly, I would like to see it right about now. It can be argued that this isn't that important just now, but I disagree. I think it's more important right now than it has ever been, considering what just might possibly be coming down the pike in terms of research funding. When the general press reports on this, they seem to put CFS after the blood supply issue and behind the prostate cancer issue. Now I'm not unsympathetic to prostate cancer sufferers by any means! But while cancer can be a death sentence, CFS is a life sentence. The suicide rate among CFS sufferers is far too high, and CFS sufferers are also thought to be prone to cancer as well. As the good doctor put it recently, and I can't quote her verbatim, but how do you measure the tragedy of a horrible death against the tragedy of a horrible life? I tend to think XAND is a bit broad and vague. Perhaps something a little more specific that helps people understand the gravity of the condition, like a kind of reference point, and thus my preference for a name that ends with the letters I.D.S.
    Does anyone think there might be a better name?
    What would you call it if you could name it yourself?
    And if it were named after a person, whose name might that be?
    Anyone?
     
  6. Mark

    Mark Acting CEO

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    Mysterious Murine-Retrovirus-related ME/CFS Mixture (MMMM)?

    Poll?

    ME
    CFS
    ME/CFS
    CFS/ME
    ME/CFS / CFS/ME
    CFIDS
    IDS
    XAND
    SAND
    X
    WTF
     
  7. Stone

    Stone Senior Member

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    Okay, WTF-IDS Now we're getting somewhere! ;-) I like it a whole lot better than CFS. Bryant Gumble once said on The Today Show that everybody he ever knew with Chronic Fatigue Syndrome just seemed chronically unmotivated. He got a lovely greeting from me in the mail after that, but he never did respond though. WTF? Once I received an email from an attorney about some crazy and insanely petty legal thing we were involved in and I forwarded it to my sister so she could see just how ridiculous the thing was. My sister meant to respond to me with, "WTF?", but accidentally sent it as a reply to the attorney. The attorney then emailed my sister and asked her what "WTF?" meant, to which my sister replied, "Where's The Fairness?".
     
  8. ixchelkali

    ixchelkali Senior Member

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    :D:D:D:D LOL.
     
  9. L'engle

    L'engle moderate ME

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    I like P.A.N.D.O.R.A's term, neuroendocrinimmune deficiency syndrome (NEIDS). I might not be right on the spelling.
     
  10. taniaaust1

    taniaaust1

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    XAND sounded all right till it was put that way LOL. We'd also be hearing back "Sand where?" I now dont think i like XAND.

    MMMM .. now that is something i could say no matter how bad my crash was.. MMMMM . lol maybe it's suitable. or maybe a name which shortened sounds like a groan.
     
  11. Stone

    Stone Senior Member

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    How about Meandering Kryptonite Syndrome?
     
  12. ixchelkali

    ixchelkali Senior Member

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    Stone, thank you for starting this thread. I've been thinking the same thing in almost exacting the same words all day.

    They said we couldn't change the name to CFIDS or ME because they implied an etiology and the etiology wasn't known. So NOW can we finally lose the F-word? Then they said we couldn't change it because it was already known as CFS and it would be too confusing, they had codes assigned to CFS, they had research published about CFS. Oh, puh-leeze. Like AIDS hadn't had a few names before they settled on AIDS. Remember GRID (Gay Related Immune Deficiency)? Remember ACIDS (Acquired Community Immune Deficiency Syndrome)? Not to mention that HIV was LAV and HTLV-III before it became HIV.

    Maybe they'll change the name of XMRV? Xenotropic Murine Retrovirus-like Virus doesn't exactly flow trippingly off the tongue. And it's not a mouse virus now, it's a human virus.

    I kind of favor something with neuro-immune or neuro-endocrine-immune, because it's broad enough to incorporate other related diseases like Gulf War Syndrome, fibromyalgia, etc, if they turn out to be related to XMRV, but it sounds more like the serious disease this is.

    Or we could call it Ramsey's disease. Or go back to myalgic encephalomyelitis. Or Aquired Multiple Every System Syndrome (A MESS).

    Just lose the effing F-word.
     
  13. ixchelkali

    ixchelkali Senior Member

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    ROFL! :tear::Sign Good one::tear:
     
  14. taniaaust1

    taniaaust1

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    I personally think it's too early to be calling for a name change based on XRMV, maybe it is just a virus which likes sick people who are more suspectable. It may not be the actual cause of the CFIDS. I'd love to see a name which is representive of whatever is going on in our bodies to give us all the vulnerablities we have in the first place. What is wrong with us which allows such things to take hold????

    XMRV has been found in some other illnesses too. It may turn out to be a non specific finding (eg found in other illnesses too so diagnoses cant be based on it... and maybe not all with it will go on and get symptoms). XMRV has already been found to be higher in some illnesses than the normal pop.. eg Atypical MS, Autism, Prostate cancer, how many other illnesses out there in which it's higher in too than the average pop???. as several have been found already, there is very likely to be others. Maybe it is just as high in something else as it is in us?? This is possible.. just not enough is known.

    It may be just an opportuntist illness!! possibly a bad one at that but something we may get more due to something else.

    Only time will tell.. i really wish in the meantime people used CFIDS more.. i detest CFS.
     
  15. Anika

    Anika Senior Member

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    I think Dr. Peterson was recently quoted as saying that the best single test currently to help verify CFIDS is the natural killer cell function test. Didn't the Japanese earlier call it something like Killer cell disease or sickness?

    I'm not sure how that could work with the IDS though - we don't want to say we've got "K-IDS" when someone asks what is wrong with us.....
    ;)
    (my first emoticon!)
     
  16. JAH

    JAH Senior Member

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    WTF is genius-- I love it. Say it to myself on a regular basis. (wtf is this new weirdness...)
    Hate the way the name cfs minimizes this illness. Though I have to say that the fatigue is absolutely the most disabling aspect of it for me, even though that word does not capture it.

    JAH

    ps. wrote to Bryant Gumbel years ago for his hurtful comments-- can't believe someone else remembers that!
     
  17. MNC

    MNC Senior Member

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    If XMRV is 100% confirmed it should be definetely called Whipemi's Disease for Whittemore, Peterson and Mikovits.
     
  18. Athene

    Athene ihateticks.me

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    Mikovits Disease?

    Personally, I'd go for the traditional method of honouring the person who finally defined what it really is. My vote is for Mikovits Disease.

    I'm not keen on acronyms. They're OK for the military and computer programmers, but... you know, this is an illness. We cannot make a list of all its symptoms to compose the title.
     
  19. zoe.a.m.

    zoe.a.m. Senior Member

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    I've got no name breakthroughs as of yet, but I am thoroughly enjoying this thread. The thread title is basically something I say to myself at least once a week while I figuratively bang my head against the figurative wall.

    Cannot.stop.laughing at all the variations of WTF and love the story of mis-sending it to the lawyer--ha!!

    I'm on the side of a new name now while the iron is hot and adding/changing later to include XAND or some variation when more is known. Kind of like how AIDS became HIV/AIDS and how there are cases of AIDS that are HIV-.
     
  20. Galena1

    Galena1

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    Mmmm...Not sure about this one, inevitably some will read it as Whip Me Disease :D(WMD?) Weapon of Mass Destruction? Certainly true in some respects!

    Seriously, the sooner the CFS reference is eliminated the better. If I mention CFS to a non-sufferer I can almost see the 'thinks bubble' pop up, "You think that you've had a bad/tiring day, I've been to work and it was hell".

    It's unfortunate that the ME acronym does appear to focus on 'me' and perhaps perpetuates some of the myths that it is a 'self-inflicted' illness.

    Mark - WTF :cool:
     

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