New name for CFIDS

Discussion in 'Fibromyalgia Main Forum' started by Echos, Mar 17, 2003.

  1. Echos

    Echos New Member

    I have just heard of the new name they have decided on for CFIDS. Neuroendocrineimmune Dysfunction Syndrome. Still they use the word syndrome. I have found when I use this word, people, to include health care professionals, tend to roll their eyes. The article on it is on co-cure if anyone would like to read on it. I find the word syndrome a slap in the face. Usually when you say this word to a doctor, the next words out of their mouths is, "And have you seen a Psychiatrist for this?" This again has left me feeling frustrated. Your opinions on this name and the word "Syndrome."
    SWAK's,
    Echos
  2. Mikie

    Mikie Moderator

    This sounds better. I am impressed that Neuro... is the first part of the name of this illness. I have been harping that our illnesses are not rheumatological in nature, even though there are thrumy-type symptoms, but rather neurological in nature.

    Gulf War Syndrome is now called Gulf War Illness now that it is getting more respect. Hmmmmm, we have the Rodney Dangerfield of illnesses; we get no respect. Well, that's changing, just not fast enough.

    Thanks for sharing this with us.

    Love, Mikie
  3. Echos

    Echos New Member

    I do agreee that "Illness" should take the place of "Syndrome". "Neuroendocrineimmune Dysfunction Illness." All that I ask for is more respect for myself and this illness. I shouldn't have to look towards the ground and mumble the name of my illness, do to the shame I'm made to feel because of it. I didn't hide my head in shame when I had and was fighting cancer. I want the people to take this illness for what it is and give those who have it the respect we do deserve. I am however, overjoyed at the beginning of this new name, "Neuroendocrineimmune Dysfunction, (NDS)." Perhaps this will be the beginning of the turn around that we have been forever waiting for. One can hope anyway.

    Echos
  4. Echos

    Echos New Member


    A group of scientists and patients has been working for the
    past two years to come up with a new name and expects to
    present it to the federal government's CFS Advisory Committee
    in the next few months. With committee approval, it would go on
    to the U.S. Secretary of Health and Human Services, Tommy
    Thompson, who can make it official, Jason says.


    The new name -- neuroendocrineimmune dysfunction
    syndrome, or NDS -- better represents the illness, Jason says.


    "The term is broad enough to encompass the most commonly
    reported symptoms [which] are associated with or referable to
    the neurologic, neuroendocrine and immunologic systems,"
    states a paper prepared by the group proposing the name
    change.


    Continued use of the term "syndrome" recognizes that it's a
    "collection of signs and symptoms that in their totality define this
    illness," the group says.


    Echos
  5. Echos

    Echos New Member

    I completely agree with you. Not only do they have to do better, but we deserve better. I don't believe that the ICD-9 code 780.79 Malaise and Fatigue will change. This will more than likely continue to be an identifying code for this illness. There is more than a change in the name that is required here. It will take them another 10 years just to figure that one out.

    Echos
    [This Message was Edited on 03/17/2003]
  6. kalina

    kalina New Member

    Maybe I'm in the minority here, but I'm happy that they at least got rid of that awful word, "FATIGUE." I'm not terribly happy with the inclusion of the term "Syndrome," but at least it's a step in the right direction. I think the day will come when we get a better name, but more research needs to be done before that will happen.

    Kalina
  7. Mikie

    Mikie Moderator

    What I think is being missed here is that we are getting any attention at all. This is a HUGE step forward. I know, I know; it's long overdue.

    What will finally move the government to act is when the country starts to finally feel the economic results of having so many disabled. Think of the difference we could all make if we were cured and contributing to our economy instead of having to draw SS and being limited in our ability to earn and pay taxes.

    Love, Mikie
  8. Bellesmom

    Bellesmom New Member

    It's too darned hard to say/pronounce.

    Take it back - I don't like it. I like the acronyms better. They are capitalized and stand out.

    They should let the folks who have it name it, right?

    Pam
  9. Rene

    Rene New Member

    I'm glad they got rid of the "F" word. don't have a problems with syndrome- SIDS and AIDS are both syndrome and there are lots more serious deadly syndromes.
    Rene
  10. amymb74

    amymb74 New Member

    I know I'm a minority here but I say keep cfids. If it were given a more serious name to begin with than that would have been great - I do agree the name stinks. But, I can see in a year or so down the road non-believers say 'told you so, never existed, never even hear of the illness anymore'. I don't think a name change is going to help us any - I've had cfids for 10 years & don't think I'll ever say neuroendocrineimmunewhatever dysfunction syndrome. I truly hope it makes a world of difference but I think, good or bad, the name should be left alone. Amy
  11. beckster

    beckster New Member

    The new one is better. But I would lop off syndrome period. Why not just Neuroendocrineimmune dysfunction. Period. Yeah, syndromes are too easily thrown into wacko
    basket, or the psych basket. But I also don't like the word disorder, because it also has the ring of all the (many) psychiatric disorders. So I used the word dysfunction. You know, you don't have an AIDS "disorder" or a cancer "disorder." I'd keep the term "illness" out of there ,too, it has a general lay connotation with (usually) less severe things like the flu, or things of shorter duration or less severity. You know, you may be "ill with the flu" but we don't usually say someone is "ill with the cancer." Or, how about, to keep it a bit shorter, just
    NID, neuroimmune dysfunction. Or, neuroimmune disease, better yet. I mean, you don't have a Parkinson's dysfunction, but Parkinson's disease. Tuberculosis isn't a syndrome or disorder or dysfunction, its a disease. (Especially with all the infectious conncections they are finding, it seems to fit under "disease.")
  12. Echos

    Echos New Member


    [Moderator's Note: Dr. Jason sent the following message to Linda Searing,
    the HealthScoutNews reporter who wrote yesterday's article on the Name
    Change effort. See
    http://listserv.nodak.edu/scripts/wa.exe?A2=ind0303c&L=co-cure&F=&S=&P=1343
    for a copy of this article.]

    Dear Linda:

    Thank you for doing a story on the name change, and for showing your
    readers how serious this illness is. However, in your story, you mentioned
    that the Name Change Work group was recommending that the term
    Neuroendocrineimmune Dysfunction Syndrome (NDS) should replace the term
    CFS. This is not correct, as the NDS term is to serve as an umbrella term
    and under it will be several subtypes, of which ME is one of the these
    subtypes. The issue of subtypes is actually critical, and one of the most
    important aspects of this Name Change Work group document. For example, we
    wrote:

    "The NCW anticipates that the biomedical community will find that subgroups
    or subtypes of NDS provide useful nosology. Thus, the use of subgroup
    stratification offers flexibility and adaptability to the inevitable
    advances based on scientific research. This approach also promotes more
    accurate understanding of the illness when compared to the current name,
    chronic fatigue syndrome."

    And later we wrote:
    "Unfortunately, uncontrolled patient heterogeneity in empirical studies is
    a consequence of ignoring the issue of sub-classification (5,6). When
    unique patient groups are combined, any distinctions pertaining to specific
    subtypes of CFS become blurred. There has been a lack of consistency in
    such laboratory findings, which may be a function of combining distinctive
    groups of patients into a large heterogeneous group rather than analyzing
    them within subtypes. Researchers have begun to determine the validity of
    an approach that involves subdividing their patients into groups."

    I recognize that this issue might seem like a small one, however, I can not
    emphasize enough that it is actually a most significant and critical issue
    for the patient community.

    In addition, there is another incorrect statement, and that involves my
    membership on the CFS Advisory Committee. I was a member of the CFS
    Coordinating Committee, but that committee ended as of last fall. A new CFS
    Advisory Committee is being constituted, and the officials at HHS have not
    yet released the names of the members who will be on this Committee.

    If it is possible to insert these changes in the article or to publish a
    correction, I would be most appreciative.

    Sincerely,

    Leonard Jason, Ph.D.
    Director, Center for Community Research

    Echos
  13. Madelyn

    Madelyn New Member

    I totally agree with lifedancer! We'd have to explain to EVERYONE all over again what the heck it means...in general...then in our case...

    Madelyn
  14. beckster

    beckster New Member

    I thought it was wonderful and very useful. It seems we "sort ourselves out" into different subgroups or subtypes, and I have been wondering for 10 or 15 years when the researchers, much less the physicians, were going to catch up and catch on to this. I think it will make a difference in nosology, research, and treatment. And, hopefully, also in general understanding by the medical and lay populations.
  15. pearls

    pearls New Member

    Instead of writing it as Neuroendocrineimmune Dysfunction Syndrome, why not simplify it as Neuro-endocrine Immune Dysfunction? I like it that way for two reasons:

    1) Lay people can read it.

    2) It says the same thing, except for "syndrome."

    I was diagnosed with CFIDS first and then with fibromyalgia, as well. One should not wish for an additional illness, but I honestly can say it was a relief, of sorts, to be able to say "fibromyalgia" instead of "chronic fatigue syndrome." Fibromyalgia sounds like a disease and chronic fatigue syndrome sounds like the sufferer is a malingerer!

    Okay, people. What do you think about Neuro-Endocrine Immune Dysfunction or NEID?

    -Pearl
    [This Message was Edited on 03/18/2003]
  16. Plantscaper

    Plantscaper New Member

    I have tested the use of the name, CFS vs. Fibromyalgia and got a lot more respect and concern with the use of the latter..only, tried it a few times, just to see what the difference result was..anything, to me, is better than Chronic Fatigue Syndrome..everybody thinks they suffer from chronic fatigue, so they think that you just have a transitory condition like them... but, if you don't, it certainly is your fault, according to them...I have heard a lot of jokes and laughter connected to that name, and I am exhausted....it may be too late to change the prejudice, but just give me a name that really represents what is involved here...I don't think that is the best selection, but it has to be better than (yucko!)Chronic Fatigue Syndrome...
  17. Mike

    Mike New Member

    with a new name change because my doctor didn't even mention CFS. It wasn't until I searched the Internet that I realized that I had CFS. If I initially found "Neuroendocrineimmune Dysfunction Syndrome", I may have initially passed it by without researching it.