Changing the name: Low Natural Killer Cell Syndrome, CFIDS .????

Discussion in 'Fibromyalgia Main Forum' started by SleepyWillow25, Oct 25, 2002.

  1. SleepyWillow25

    SleepyWillow25 New Member

    CFS stands for Chronic Fatigue Syndrome. You may have heard of it
    under different names, in Japan, CFS is known as Low Natural Killer
    Cell Syndrome and in other countries such names as the "yuppie flu";
    C.F.I.D.S. (chronic fatigue and immune dysfunction syndrome), or ME
    (Myalgic Encephalomyelitis).

    Myalgic Encephalomyelitis broken down means,

    My - Muscle

    Algic - Pain

    Encephalo - Brain

    Mye - Spinal Cord

    Itis - Inflammation...

    All these names do not describe the illness we are all living with
    and give the public the asumbtion that it is just normal fatigue!!!
    Not everyone has M.E, so why call it M.E apart from it is hard to
    spell, pronounce and it sounds SCARY??? Why call it CFS, when it is
    not just Chronic Fatigue??? Most people in the world at sometime
    gets some sort of Chronic Fatigue. What we experience is far beyound
    any Chronic Fatigue.
    CFIDS - Sounds better then CFS i think but again if I did not know
    about this illness I would think automatically FATIGUE... og they get
    tired and sleep all the time. They have depressed Immune Systems.
    Yuppie Flu WELL HELLO we won't even go there!!! GRRRRRR!!!
    Chronic Fatigue - GRRRRRRRRRR GRRRRRRRRRRR CF is not CFS... do a
    search on CFS and then do a search on CFS on the net!!! They both
    come up with the same websites. Our illness...
    Maybe Japan use of the name Low Natural Killer Cell Syndrome sounds
    better as it isn't just describing one aspect of our illness... then
    again it sounds like if one of us coughs it is going to spread like
    the plague and KILL US ALL...

    Any ideas??? I know this has been discussed for years... just
    wondering what you may think...

    Ok I am going to rest now... my body is paying for all this typing.

    I am so sorry about my venting tonight! I feel rather guilty as I
    know there are people far sicker then I. Sorry!!!!!!

    Belle

    xxoo



  2. SleepyWillow25

    SleepyWillow25 New Member

    CFS stands for Chronic Fatigue Syndrome. You may have heard of it
    under different names, in Japan, CFS is known as Low Natural Killer
    Cell Syndrome and in other countries such names as the "yuppie flu";
    C.F.I.D.S. (chronic fatigue and immune dysfunction syndrome), or ME
    (Myalgic Encephalomyelitis).

    Myalgic Encephalomyelitis broken down means,

    My - Muscle

    Algic - Pain

    Encephalo - Brain

    Mye - Spinal Cord

    Itis - Inflammation...

    All these names do not describe the illness we are all living with
    and give the public the asumbtion that it is just normal fatigue!!!
    Not everyone has M.E, so why call it M.E apart from it is hard to
    spell, pronounce and it sounds SCARY??? Why call it CFS, when it is
    not just Chronic Fatigue??? Most people in the world at sometime
    gets some sort of Chronic Fatigue. What we experience is far beyound
    any Chronic Fatigue.
    CFIDS - Sounds better then CFS i think but again if I did not know
    about this illness I would think automatically FATIGUE... og they get
    tired and sleep all the time. They have depressed Immune Systems.
    Yuppie Flu WELL HELLO we won't even go there!!! GRRRRRR!!!
    Chronic Fatigue - GRRRRRRRRRR GRRRRRRRRRRR CF is not CFS... do a
    search on CFS and then do a search on CFS on the net!!! They both
    come up with the same websites. Our illness...
    Maybe Japan use of the name Low Natural Killer Cell Syndrome sounds
    better as it isn't just describing one aspect of our illness... then
    again it sounds like if one of us coughs it is going to spread like
    the plague and KILL US ALL...

    Any ideas??? I know this has been discussed for years... just
    wondering what you may think...

    Ok I am going to rest now... my body is paying for all this typing.

    I am so sorry about my venting tonight! I feel rather guilty as I
    know there are people far sicker then I. Sorry!!!!!!

    Belle

    xxoo



  3. SleepyWillow25

    SleepyWillow25 New Member

    Thanx for replying! :) The new name they are thinking of sounds much better... Mind you we really will confuse everybody if the name is changed... most ppl are just getting used to CFS....


    hugs

    belle
  4. sb439

    sb439 New Member

    .... "chronic neuroendocrineimmune dysfunction syndrome". As one of our (CFIDS/CFS/ME-persons)concerns is that our syndrome (dd) is taken seriously, this sounds just like the ticket. I would be interested in how many of us who have been diagnosed with CFS, etc. fit the name. I certainly do, as far as my test results go.

    By the way - saw my new PCP for the first time yesterday, gave her a pile of sheets with my entire 'medical history', which is by now quite long, told her I'd been diagnosed with CFIDS, filled in a list of symptoms, etc. When I left with a sheet for a lab, what she had written on it as reason for testing was, you guess it, 'fatigue'. And this is a symptom I neither have nor told her I had. This got me angry. The name CFS really needs to be changed !!!!!

    Susanne
  5. Rain122865

    Rain122865 New Member

    "CNDS", which stands for "chronic neuroendocrineimmune dysfunction syndrome"
    Ok now if they change the name to THAT how will I ever remember what I have??????? I will have to carry cards with me to pass out to people when someone ask what is wrong with me.......life is great!!! LOL alot