Rich Carson wants suggestions....

Discussion in 'Fibromyalgia Main Forum' started by tlayne, Aug 4, 2006.

  1. tlayne

    tlayne Member

    on a new name for Chronic Fatigue Syndrome. Has a topic been started on this yet? If not let's get it going! There are so many intelligent people here with too many years of experience with this DD that we are bound to come up with a more appropriate name. My suggestion would be what we all call it DD, but it is not the most appropriate. any suggestions? Hugs to all, Tam
  2. kholmes

    kholmes New Member

    Jazz pianist, Keith Jarrett, who came down with CFIDs in 1997, calls it the "forever dead syndrome."

    Here's a passage from Dorothy Wall's book, EMBRACING THE INVISIBLE: "Defining this disabling illness by the single symptom, fatigue, is like calling diabetes chronic thirst syndrome or cancer chronic tumor syndrome."

    CEBV and ME don't work well, either, since Epstein Barr antibodies are present in most of the population, and we don't all show evidence of muscle pain or brain inflammation.

    For me, CFIDS isn't too bad, but it still doesn't cut it.

    CIDS (Chronic Immune Dysfunction Syndrome) would actually be better. I'm not sure that fatigue is the primary symptom anymore. It is just one of the myriad symptoms with this DD.


    Let's keep thinking!

    Kholmes




    [This Message was Edited on 08/05/2006]
  3. UnicornK

    UnicornK New Member

    but I don't think it will go over in mainstream society. LOL Also, I think that since it seems that both CFS and FM, plus a lot of other "syndromes", seem to be caused by similar brain abnormalities it will be difficult to name this. Maybe we should try to name it all under one umbrella. What do you all think?

    God Bless.
  4. fight4acure

    fight4acure Member

    This is a joke and I hope no one takes it offensively, but here it goes. Name it DDS.... Dumb doc syndrome, because they forget how serious we are in pain and fatigue.
  5. UnicornK

    UnicornK New Member

    No joke here...LOL I think you are absolutely correct. But again...I don't think mainstream society will go for it! LOL

    God Bless.
  6. fight4acure

    fight4acure Member

    M.E.! I think M.E. is a good name, as it was the original name. People don't need to know one symptom in the title or they will have a misunderstanding, just like the chronic fatigue. M.E. sounds good!

    Unikorn, you're quite right!

    :)
  7. springrose22

    springrose22 New Member

    That is the proper name for this disease, but the CDC, in its wisdom, decided to change it back in the 80's. That was probably done in order to make sure that they (the CDC), maintained control, and could ignore the rest of the world, as though it doesn't exist. That was a terrible move. There is no need to name a disease by its symptoms. We should all just call it ME. Period. Marie
    [This Message was Edited on 08/04/2006]
  8. kholmes

    kholmes New Member

    Myalgic Encephalomyelitis certainly makes the illness sound more credible than "Chronic Fatigue Syndrome," but isn't the problem that not everyone with this illness has an inflammation of the brain, which the name suggests?

    Kholmes
    [This Message was Edited on 08/04/2006]
  9. tlayne

    tlayne Member

    Is it a disease or syndrome? Syndrome seems to imply that it is not as debilitating as it is, or not taken as seriously. At least that is the impression that I have always gotten.

    According to my Medical Nursing Dictionary these are the definitions;

    Syndrome, a complex of signs and symptoms resulting from a common cause, or appearing, in combination, to present a clinical picture of a disease or inherited abnormality.

    Disease, 1) a condition of abnormal vital function involving any structure, part, or system of an organism. 2)A specific illness or disorder characterized by a recognizable set of signs and symptoms, attributable to heredity, infection, diet, or environment.

    I believe that part of the reason that we all have different signs and symptoms is because we have a compermized immune system. I also think that we have been exposed to various viruses and bacteria that we have been more suceptable to at the time of exposure.

    From what I gather this is the reason why so many MDs think it is all in our heads....Our symptoms are various and not spelled out in black and white for them.

    Let's continue to debate this and see if we can come up with a name that would make the medical community, and community in general, take this DD more seriously.

    What are you guys thinking? Hugs, Tam
  10. Jeanne-in-Canada

    Jeanne-in-Canada New Member


    Though have to admit, it is a terrible bugger to remember and I took medical terminology and was a med. secretary. But I guess that's ok, because many of the nasty diseases have abbreviations that are well known though people may be hard pressed to know what all they stand for.

    FM/CFS is a syndrome, and is not classified as a disease because the cause isn't yet known, its a technical glitch really. If you do't think a syndrome is serious enough, think AIDS, you can't get any more serious. Which goes back to make their technicality kind of dumb because we know the cause of AIDS, but its still a syndrome. hmmm

    I've read some compelling articles compiled by an ME association that the reason america changed ME to CFS is to divide and conquer and its working. It sounds innocuous now and demeans the severity of it. ME sounds horrible and they knew it. It also divides the symptoms to seperate FM and CFS, and again demeans the severity. A comprehensive symptom list of ME encompassed all the symptoms of both FM AND CFS and I still think its the same disease, but some people exhibit more one end than the other of symptoms, while others w/ severe cases get the full meal deal.


    jeanne

  11. artseyone

    artseyone New Member

    Myalgic Encephelomyelitis (sp?) is the correct name for our illness...We suffer from a seriously debilitating disease and drastic measures must be employed to be recognized. The name ME lends credibility.
    I implore you to change the name to ME..
    Thanks,
    Artseyone
  12. Pianowoman

    Pianowoman New Member

  13. tlayne

    tlayne Member

    Here is the definition;

    Myalgic- from what I gather this means pain (algic). myalga is muscle pain. I couldn't find this word with Encephalomyelitis.

    Encephalomyelitis- an inflammatory condition of the brain and spinal cord characterized by fever, headache, stiff neck, back pain, and vomiting.

    There is more to it than that, but I think you have the general picture. This has more to do with an infection of the brain which is most likly acute and a high chance of death.

    I am still on the page that what we have has to do with the immune system, and that as we have more toxic exposures it is progressive.

    What do you all think? Hugs, Tam
  14. KMD90603

    KMD90603 New Member

    I vote for ME (Myalgic Encephalomyelitis) too. It was the original name, and I think would be the most fitting. Someone else mentioned chronic immune dysfunction syndrome (CIDS), that would also be better than CFS.


    Oh, and here is a definition for ME that I found on Wikipedia:

    "myalgic encephalomyelitis, a syndrome involving inflammation of the central nervous system with symptoms of muscle pain and fatigue; the term has sometimes been used interchangeably with chronic fatigue syndrome, though there is still controversy over the distinction."

    Hugs,
    Kim
    [This Message was Edited on 08/05/2006]
  15. Marta608

    Marta608 Member

    I'm thrilled at the idea of a new name. I'm completely unsure of how to figure one out.

    Since few agree on one cause for CFS - in fact, there may be many causes - I don't know how one name can cover them all. I think this is the reason it's still called CFS.

    In my case I believe in the theory of neurotransmitter disruption causing a severe lack of serotonin as the primary cause, the beginning of all the rest of the symptoms including FM.

    Neuro-something............. Hmmm, I like wakemeup's idea but I can't pronounce it. Ah, yes!!! NME! Enemy! That fits but it would be as bad as CFS for recognition. Nuts.

    Marta

    [This Message was Edited on 08/05/2006]
  16. Lolalee

    Lolalee New Member

    I'd like to cast my vote for Myalgic Encephalomyelitis.

    I was just out in my garden trying to think of a new name and this one sounded really good to me. When I came here to post and saw how many others feel the same way,I was glad. It's not too hard to pronouce and it sounds credible.

    Lolalee
  17. ulala

    ulala New Member

    Genetic Immune Dysfunction Syndrome?
  18. findmind

    findmind New Member

    I've signed so many petitions for M.E. over the years, and refer to it as ME to doctors I see; BUT...

    Now that there are findings about the parainfluenza-5 coming along, and the neurologists saying THEY want the condition in their specialty, I think we really should wait and see.

    I saw a fellow female soldier get almost completely paralyzed by a "swine flu" vaccine we got in Army...that was 1974. If swine have been spreading a virus to other animals and it has worked its way up to humans, that could be vital in the renaming of this dd.

    Remember, PIV-5 was once named Simian Virus-5, first found in 1956, and it was found in monkey kidney cell cultures, then in a human respiratory infection, then in fatal infectious hepatitis (in a person), then in child's throat swab, then in 1970 in brain cell from a patient with Cruetzfeldt-Jacob disease.

    I am a devoted reader of the forum, by the national cfids foundation. I've followed their work since their first issue. They state in their Summer 2006 issue: "....the knowledge gained from this information along with the scientific verification or proof ... WOULD BECOME THE DRIVING FORCE FOR CHANGING THE VERY NATURE OF THIS DISEASE." (P.5)

    Now, if the very nature of the disease is found, and it is NOT M.E., how would we ever get the name changed again???

    Some people would get diagnosed with FM, some with CFS, some with ME, and MAYBE some with the newly found cause and name: more confusion and doctor's ignorance would abound.

    I say we have to WAIT...it is very hard to do because we have been grievously damaged by the current name; those among us who have advocated for these many, long 20 years without any concern by the cdc or nih could not stand for us to be wrong again.

    I question the push, Rich, for our opinion right now, as the CDC's ad campaign begins to "brand" the name into the nation's consciousness once and for all. What good is a push for a name change now? Divert us? Demoralize us? Keep us busy while the cdc completes their job?

    I'm sorry if I sound so skeptical; I guess it's because I am. I'm waiting for the TRUTH.

    There's always hope,
    findmind

  19. findmind

    findmind New Member

    AND, (2nd post :)>) I can just hear the public saying "all those people talk about is ME, ME, ME! Can't you see it coming?????

    findmind

    No name until CAUSE is found, please!!!
  20. wkirk87

    wkirk87 New Member

    The names will change a lot over the next 30-70 years no matter what. We're just a big moshpit of sufferers right now. They only 'diagnose' us with this DD by ruling out everything else. What we need is some serious concern and acknowledgement from the public/government/medical field, and a simple name change won't do it. I mean, when a person in need comes to you pleading for help and you can clearly see that their suffering, do you just turn them away and tell them to 'get over it'?... It's hopeless; people like that can't change, especially not from a simple name change. Unfortunately, I think either we will have to cure this DD ourselves by stopping it from spreading (I know it sounds bad, but that's what it took for the plague, ebola, etc., it might be necessary for this DD too) or the DD won't be cured until everyone has or is close to someone who has the DD (thus enough people will begin to actually care). I'm sorry to be so pessimistic; I just think running from the truth will in the long run cause us more pain.

    Anyways, back on topic, I like CNDS/chronic neuroendocrineimmune dysfunction syndrome and NEID/Neuro Endocrine Immune Dysfunction because I don't really see how they could go wrong, like chronic fatigue syndrome has.