About The CFS name change.. a question

Discussion in 'Fibromyalgia Main Forum' started by NashCag, Jan 31, 2007.

  1. NashCag

    NashCag New Member

    I was just wondering, Does anyone else have concerns about changing the name Chronic Fatigue Syndrome to something else.
    I'll be the first to admit that I absolutely hate that name. It's almost patrionizing, and it's also so inaccurate.
    But it's finally getting some recognition. And if it's changed, we'll have to educate people all over again.

    What do you guys think? any thoughts on this?

    :)
    [This Message was Edited on 01/31/2007]
  2. ravenpaige

    ravenpaige New Member

    Prickles, I absolutely agree. And that is why no one will ever be "cured" of CFS; because once they are cured, they have been cured of something else. Funny way to look at it, but it's true.
  3. NashCag

    NashCag New Member

    I was diagnosed with cfs in 1999, and that is the first time anyone has explained things so well.
    Thank you prickles.
  4. mezombie

    mezombie Member

    You explained CFS beautifully. I do think people have a tendency to forget the "S" in CFS stands for "syndrome". It's very important to understand that a syndrome is just a set of symptoms.

    Like you, I think more subsets will be found (like ME) and those will be given names. For example, CFS patients who have active or reactivated herpes and EBV titres could be the next recognized subset. They are candidates for the Valcyte study. Dr. Montoya has stated that he hopes to find concrete biological markers as part of his clinical trial of this drug.

    In the meantime, those of us with CFS have <b>symptoms</b>. It's always good to check if those symptoms fall into a disease that's already recognized, because that means treatment and possibly even a cure. And if Chronic Fatigue Syndrome is the only explanation for the symptoms? Well, there are treatments for those, as well.
  5. u34rb

    u34rb New Member

    I don't think that changing the name is a good idea.

    There a difference between an '~itis' and a '~pathy', so there's ME1 and ME2 as well as CFS, etc.

  6. mezombie

    mezombie Member

    When people refer to "ME", they usually mean Myalgic Encephalomyelitis. This "ME" is actually recognized by WHO.

    There is some controversy over the "myelitis" part of the name.

    For a good explanation of the history of ME and its relationship to CFS, check out www.ahummingbirdsguide.com.
  7. shar6710

    shar6710 New Member

    I'm not sure I agree with y'all.

    Don't forget AIDS is a syndrome. It was originally called by other names until it was found to be an Acquired Immune Deficiency. And it was named AIDS before the HIV virus was identified as the cause.

    The group at Stanford refers to CFS as Virus Induced CNS Dysfunction. Right now they only include patients with high HHV and EBV titers as part if this "subset" of CFS. But what if it is found that other viruses, bacteria or even fungi can be responsible for the same symptoms, and the pathology is in effect the same. Then it might become Acquired CNS Dysfunction, Or Pathogen Induced CNS Dysfunction, or Acquired Infectious Induced CNS Dysfunction......or whatever.

    I believe a cause or group of causes will be found and the Syndrome may be renamed based on that. I don't think it will remain a "syndrome" like AIDS because I believe the definition will be refined and I think that the symptoms of CFS are more homogeneous than that of AIDS. And I don't think CFS will remain as a legitimate diagnosis once this happens.

    Just my humble opinion. Hey maybe we should start a pool! Everyone throws in a dollar on the eventual cause and name! Winner takes all! Oh yeah that's probably illegal here in the USA.

    Respectfully,

    Shar
  8. Lichu3

    Lichu3 New Member

    It appears the focus of the name change is to make CFS less trivial in the public eye primarily and perhaps to prompt others that there are symptoms other than fatigue.

    If the recent campaign has been successful then hopefully we can still use CFS and have others recognize it for the severe illness it is. I have similar concerns in that if the name change is too quick, people will have a harder time recognizing it.

    My great hope is that as more people are diagnosed with this illness that this will prompt more research funding into treatment. AIDS was (and is) a challenge but realize that from the time it was discovered until now (25 years), we've come a long way in treating it. I hope the same occurs for CFS, especially if Montoya's work is successful and other scientists decide to re-explore other causes for CFS.
  9. NashCag

    NashCag New Member

    Good responeses from everybody. I always enjoy reading what you have to say.
    I think if we could get some real airtime, like on the Today show, GMA, or anything like that, and have Doctors explain it as well as prickles did, we wouldn't need a name change.
    How can we get real attention like that?
    Write to Today?
    I wonder if Doctors and newspeople read some of our posts,
    they might gain more understanding.

  10. yellowbird

    yellowbird New Member

    If it's true that people are now educated about CFS, all we have to do, after saying "I have M.E." is say "it used to be called CFS". Only six little extra words.
  11. Marta608

    Marta608 Member

    Perfect explaination of how I feel about it also.

    Marta