CHANGE THE NAME

Discussion in 'Fibromyalgia Main Forum' started by sean, Sep 28, 2002.

  1. sean

    sean New Member

    I came across a website that, refered to the ridiculous amount of names given to the condition most commonly, called in the U.K M.E, and in the states C.F.S. There are many other names for this condition, and I'm not going to mention them all. There was also some made up names on the website, they were there as a sort of joke of the fact there are some many names for the condition, Here are some of the suggested names:

    1. Murphy's disease or Murphy's syndrome - as in murphy's law that states that if anything can go wrong it will go wrong.

    2.The disease formerly known as CFS

    3.The disease that dare not speak it's name.

    4. The " I'm so sick of being sick disease"

    5. ABHS (Achy breaky heart syndrome)

    6. dd itis

    7. CRAPPS Chronic relapsing and persistant sick syndrome.

    8. DAMN Dys autonomic myalgic neuroencephalopathy.

    I am now considering doing a website on the subject, so if you can come up with any new names It would be very helpful, maybe we could even have a vote on the best name, then send it to the powers that be, (them who decide what to call a disease) and say to them look it's bad enough that a lot of doctors don't wan't to recognise this condition, so couldn't you at least give it a name that everyone agrees on.
  2. sean

    sean New Member

    I came across a website that, refered to the ridiculous amount of names given to the condition most commonly, called in the U.K M.E, and in the states C.F.S. There are many other names for this condition, and I'm not going to mention them all. There was also some made up names on the website, they were there as a sort of joke of the fact there are some many names for the condition, Here are some of the suggested names:

    1. Murphy's disease or Murphy's syndrome - as in murphy's law that states that if anything can go wrong it will go wrong.

    2.The disease formerly known as CFS

    3.The disease that dare not speak it's name.

    4. The " I'm so sick of being sick disease"

    5. ABHS (Achy breaky heart syndrome)

    6. dd itis

    7. CRAPPS Chronic relapsing and persistant sick syndrome.

    8. DAMN Dys autonomic myalgic neuroencephalopathy.

    I am now considering doing a website on the subject, so if you can come up with any new names It would be very helpful, maybe we could even have a vote on the best name, then send it to the powers that be, (them who decide what to call a disease) and say to them look it's bad enough that a lot of doctors don't wan't to recognise this condition, so couldn't you at least give it a name that everyone agrees on.
  3. allhart

    allhart New Member

    i like the frist one the best both for fm and cfs
    cfs-cfsd -cant fight stupid drs
    fm-efh- everything f------ hurts
    i hopr im not offeding anyone if i am tell me ill remove it,
    [This Message was Edited on 09/28/2002]
  4. klutzo

    klutzo New Member

    No. 8 is not just cute, it is actually quite accurate compared to most names we've had, so it gets my vote. Although I prefer Sympathetically dominant dysautonomia with denervation of organs, if we are looking for accuracy. That would be SDDDO, not very catchy.
    Klutzo
  5. Hippo

    Hippo New Member

    This is just a joke, but I heard someone refer to our condition as "Roseanne Barr Virus."

    Hippo
  6. pepper

    pepper New Member

    but Myalgicencephalomyelitis (ME) is pretty accurate and catchy too. I believe it means pain (myalgic), brain (encephalo), muscle disease (myelitis). It is often referred to ME here in Canada, but must be explained by putting CFS in parentheses after. I find CFS such a derogatory term - we should lobby to change it!
    Pepper
  7. sean

    sean New Member

    I heard the main reason the states did not adopt the name myalgic encephalomyelitis, and instead opted for chronic fatigue syndrome is, that there hasnt actually been any inflammation of the brain found with this condition. Orignally it was believed there was some inflamation of the brain. As you have pointed out what the different parts of the name mean, you will be aware that the (itis) part of the name means inflamation.
  8. Shoobie

    Shoobie New Member

    Something is going on with the brain though! Brain scans are abnormal.

    -Shoobie
  9. sb439

    sb439 New Member

    I love "murphy's syndrome".
    I also agree, there can be no doubt that something's wrong with the brain. But I believe that (at least in CFS/CFIDS so-called) there's also an immune deficiency present, so that should be "in" as well.
    Then, I still think it is very likely that there is no "one disease". I have a friend who like me has CFIDS, i.e. we both satisfy far more than required of the definitional criteria, we also both have a "typical CFIDS brain", but still, all our pains and symptoms are very different, and what helps one usually doesn't help the other, etc.
    So we may look for a new name for a syndrome, but perhaps it's too early to look for a name for a (i.e. one) disease?
    Susanne
  10. MsJoey

    MsJoey New Member

    we can think of a few good names for this! They've been trying to change the name for years already, to no avail. My personal favorites on your list are #7 & #8. LOL, those are great. We need all the humor we can get. Hey, awhile back on here, everyone told their "stories" on how/when we all came down with these DD's. Maybe you could do a search and find it. I will do it, then come back...
    Ok, what I found was a posting by dlizard, "for the polls...who's had it since childhood" And a lot of people give their stories. For whatever it's worth! I do remember a really long posting of people telling when they got it. Maybe someone else can remember....I can't remember NUTTIN' anymore. It's a miracle I still (barely) can work. I usually have the pain symptoms, fibro stuff, but the last couple weeks I've gotten the CFS side of it again. Weakness, shakiness, etc. feel like crap. Oh, well, keep plodding along somehow!
    [This Message was Edited on 09/29/2002]
  11. Wingingit

    Wingingit New Member

    Personally, I love Murphy's disease, but seeing as how that's my sisters married name, I can't vote for that one...lol.
    I read a quote in a book once where a woman refered to it as "Irritable Everything" and thought that was pretty accurate as well.
    You are absolutely right that it needs a standardized name.
    It seems the vast sea of terms used just hurts the valididty of the disease as more than just a "catch-all" for something which can't be explained and is not taken seriously enough by the medical profession.
    Some day a light bulb will go off in someone's head, they will find the root cause of this DD, all the docs will say "Oh, so that's what it is!"... and they'll all owe us a HUGE apology.
    Until then, keep up the good fight!