Myalgic Encephalomyelitis or Ramsey's Disease...why?

Discussion in 'Fibromyalgia Main Forum' started by balletdancer74, Oct 25, 2006.

  1. balletdancer74

    balletdancer74 New Member

    Hi Everyone,

    I've not posted in years and years, but I love this group.

    I'm the one who came up with the analogy of calling Parkinson's Disease, 'chronic shakiness syndrome' or Alzheimer's Disease, 'chronic forgetfulness syndrome.'

    How insulting, inaccurate and misleading!

    CFS is the same thing. We don't "just" have "fatigue." In fact, we really don't have "fatigue" but rather an indescribably debilitating weakness with a feeling of being poisoned...that's what I say, and doctors and regular people seem to "get it" a little better. Fatigue involves other "chronic" illnesses or partying all night every night - tired/fatigued.

    MANY doctors have shown that there IS inflammation in the spine, so the "itis" part is relevant. Nevertheless, I'm all for M.E. (encephalopathy or encephalomyelitis), but in order to keep things "easier" I'm also for calling it Ramsey's disease as he's the first one to truly document the disease.

    Apparently, Darwin had CFIDS/M.E. as well. He became ill after returning from the Crimean. Should we call it Darwin's Disease?!? How ridiculous would that sound?!? lol As it is people argue about evolution all the time.

    Like all of you, I'm "sick" and "tired" of the names CFS and CFIDS. At least we can all agree that a name change is imperative in order to gain awareness, respect and funding.

    Let's keep thinking. :)

    [This Message was Edited on 11/21/2006]
  2. maedaze

    maedaze New Member

    Here in New Zealand our official 'title' if you can call it that!!! Is ME.. Myalgic Encephalopathy.

    We had an outbreak in a town here a number of years ago and it was labeled as the "Tapanui Flu" - the town was called Tapanui and lots of people got sick at the same time. It was played down by the media and was labelled the "Tapanui Flu", still to this day those people havn't got the recognition they deserved. Or a decent enquiry into HOW they got sick. i.e testing of the water or if any spaying in the area was going on etc etc.

    Only one doctor fought for them and took them seriously. The rest of the country were quite happy to brush it under the carpet as a hysteria over a flu bug?

    It just proves how damaging a wrong label can be.

    I do like Ramseys disease too. :eek:)
  3. cct

    cct Member

    Thanks for the analogies!

    I have put them to good use!

    In regard to the naming question, everytime I see "Ramsey's Disease", I think of Egypt!

    Will the name "Ramsey's Disease" provide the uneducated with the opportunity for stupid jokes at our expense?

    I can just hear it . . .Oh, you have that King of Egypt disease . . . or . . Have you been to Egypt recently? . . or . . . Oh, you mean that you have that Royal Pain In The ___ disease?

    Hopefully, the group of doctors (the new-name committee) who are going to be discussing this question, will find the best possible name for this very complicated problem.
  4. balletdancer74

    balletdancer74 New Member

    Good point! I had to laugh when I read what you wrote about how ignorant people will probably laugh at the name Ramsey and connect it with Egypt. lol True. On the other hand, however, it's the ignorant people who won't even KNOW who Ramsey was in Egyptian history... *grin*

    We're damned if we do and damned if we don't. All I know is that I'll say just about anything other than CF/CFS/CFIDS...all horrible names. :)

    Let's keep thinking and thanks for your wonderful input.

    LB32 (Leeza)

    [This Message was Edited on 11/21/2006]