CFS Name Change

Discussion in 'Fibromyalgia Main Forum' started by MJJBunny, Aug 22, 2003.

  1. MJJBunny

    MJJBunny New Member

    I have been hearing about the need for a name change for Chronic Fatigue Syndrome for years now. After many meetings by groups a suggestion was made to change it to neuroendocrineimmune dysfunction syndrome.

    While I have been waiting for a name change that will eliminate the word "fatigue", I was hoping for a name that would not be so complex that we would have trouble pronouncing it.

    What is your thinking about a name change and this one in particular?
  2. MJJBunny

    MJJBunny New Member

    oops, I bumped.
  3. EZBRUZR

    EZBRUZR New Member

    Myalgic Encephalomyelitis ?

    Peace,
    eZ
  4. sumbuni

    sumbuni New Member

    In fact, there are a bunch in Canada that use M.E. instead of cfs...but! I've also read where it's not the same as cfs. I went to one of the sights for M.E. and it said that M.E. IS the same, just another name. Maybe WE need to call it M.E. instead of cfs.

    sumbuni
  5. pepper

    pepper New Member

    Our support group here in Canada is M.E.S.H. for M.E. Self-Help. I think M.E. is the best name to describe what we suffer from - and would take the stigma out of the name. I wonder what we could do to promote the name change.

    Pepper
  6. MJJBunny

    MJJBunny New Member

    In the Summer 2003 issue, volume 16 of the CFIDS Chronicle there is an article on the name change situation. In it there is an email address you can write to to give your feedback.

    I don't believe I can include it here, but if someone tells me how to convey this information, I'll be happy to share it. I think we all should have a voice in this decision.
  7. Mikie

    Mikie Moderator

    Chronic Fatigue Immunodeficiency Syndrome, which is only slightly better than Chronic Fatigue Syndrome.

    I really don't care what it is called as long as it is recognized and research for a cure is supported financially.

    Love, Mikie
  8. sumbuni

    sumbuni New Member

    They do have some kind of a immune dysfunction...it's called "Chronic Fatigue Immune Dysfunction"(I think).CFID!!
    anyway...I have it, and I'm tired people thinking I'm just being a whiney tale about being "TIRED" all the time...shheeee! Healthy people get "TIRED", but this ain't that easy. Does having to spend Saturday laid out on the couch all day, because I'm too weak and exhasted say "Tired"? I don't think so!

    Now I've had my gripe and whine today!

    sumbuni
  9. EZBRUZR

    EZBRUZR New Member

    yep, I 'gree w/both ya !

    peace :-},

    eZ
  10. MJJBunny

    MJJBunny New Member

    Since someone decided way back when to call this DD Chronic Fatigue Syndrome, all of us have had to live with the "fatigue" part of the name being thought of as just tired.

    I sent in my thoughts because if I have to live with this, I at least want someone to know my thoughts on the name. It's fine that some people have been meeting for years to discuss a name change, but they don't live our lives.

    No matter what they end up calling it or who heard what I said, I felt that I had to say something.
  11. Karrot

    Karrot New Member

    is with the term "syndrome" Although, I know that is what it is - a combination of symptoms with no known connection. But as soon as you say "syndrome" people automatically get this look like it's nothing - no big deal and if anything a mental issue. It tends to belittle the seriousness of the illness.

    IMHO,
    Karrot