What Do You Think of the New Name?

Discussion in 'Fibromyalgia Main Forum' started by Pianowoman, Feb 4, 2007.

  1. Pianowoman

    Pianowoman New Member

    An e-mail this morning announced the new name that the advisory committee has decided to recommend. I guess there are some that don't get the e-mails. I expected that there would be some discussion already.

    Anyway, if you haven't heard, they are recommending 'Myalgic Encephalopathy' as it more clearly describes the pathology For a time they feel that ME/CFS should be the designation. If approved by the board the IACFS will become the IACFS/ME.

    What is your reaction?

    Kathy
  2. pw7575

    pw7575 New Member

    I am with Stormy on this one. It is better than "CFS" but I don't love it. She said it perfectly. It is hard to pronounce and it doesn't cover the scope of the illness.

    The first part of it is Myalgic which implicates that our main symptom is muscle pain. To me that is more fibro. Personally pain has not been an issue for me.

    I have had some muscle pain in the last 5 months but I believe it is a mineral deficiency. I have had CFS for over 5 years and muscle pain has not an issue for me. I have had minor aches here and there but not often. Maybe I am alone in this but I am pretty sure I have heard others with CFS say that pain is not an issue for them.

    The second part "encephalopathy" is ok as we do have a central nervous system issue.

    Like Stormy said. It is hard to say and doesn't cover all the complexities. And to me pain shouldn't be part of the focus.

    I thought there were better names suggested. Just my opinion though.

    I guess anything is better than CFS.

    Pam
  3. Pianowoman

    Pianowoman New Member

    Encephalopathy was chosen by the committee instead of Encephalomyelitis because they felt it better described the pathology.

    My question, which has been echoed already, is the question of myalgia. I thought that muscle pain was one of the big things that differentiated FM from CFS. Some think they are one and the same illness. Others have CFS/ME but no pain. Confusing!

    The discussion will be interesting.

    Kathy
  4. Catseye

    Catseye Member

    We went from a horribly stupid, pitiful sounding name that just cries out for ridicule to one that nobody understands. Great. Sure, it's better than cfs, but it still doesn't have the attention-getting ring of something that can turn your life into a suffering, blinding hell.

    And I've never had any pain, either.

    Encephalopathy makes me think of encephalitis - brain swelling.

    I thought Multiple Metabolic System Failure would have been perfect. Oh well.

    karen
  5. phoenixrising2

    phoenixrising2 New Member

    I found this on the NINDS site.

    Prepared by:
    Office of Communications and Public Liaison
    National Institute of Neurological Disorders and Stroke(NINDS)
    National Institutes of Health
    Bethesda, MD 20892


    What is Encephalopathy?

    Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure. Encephalopathy may be caused by infectious agent (bacteria, virus, or prion), metabolic or mitochondrial dysfunction, brain tumor or increased pressure in the skull, prolonged exposure to toxic elements (including solvents, drugs, radiation, paints, industrial chemicals, and certain metals), chronic progressive trauma, poor nutrition, or lack of oxygen or blood flow to the brain. The hallmark of encephalopathy is an altered mental state. Depending on the type and severity of encephalopathy, common neurological symptoms are progressive loss of memory and cognitive ability, subtle personality changes, inability to concentrate, lethargy, and progressive loss of consciousness. Other neurological symptoms may include myoclonus (involuntary twitching of a muscle or group of muscles), nystagmus (rapid, involuntary eye movement), tremor, muscle atrophy and weakness, dementia, seizures, and loss of ability to swallow or speak. Blood tests, spinal fluid examination, imaging studies, electroencephalograms, and similar diagnostic studies may be used to differentiate the various causes of encephalopathy.

    It's been stated that we have altered blood flow to the brain and I know that I have cognitive, memory, and balance problems. It could have been caused by viruses, bacteria or chemicals. I don't know.

    I have the muscle pain, so the myalgic fits me.

    I think it's the first step in getting us away from people hearing only "fatigue" when we say what we have. I agree with erikmoldwarrior when he says,"As far as I can tell, Royal Free and Incline Village were triggered by different infections, yet wound up with semi-identical pathology, so to claim that ME and CFS are absolutely identical right down to the specific virus might not be totally accurate.
    But to assert that ME and CFS are unlike, and that "CFS is fatigue" is even more inaccurate."

    Phoenix
  6. NashCag

    NashCag New Member

    I wish I could be more supportive with the name change, but I'm not. It will still be referred to as CFS, which is fine because people are just now starting to recognize it, and ME is not just difficult to pronounce, but I still don't think it's accurate, so I'm wondering what was the point.
    The CDC finally says "hey, guess what, cfs is an actual illness" and now the name gets changed. And CFS will still be attached to it, so again I ask, what was the point?

    I'm sorry, I hope I don't sound like I'm hard to please,
    i'm usually not, but this whole name change thing is just so frustrating to me.
    However, let me tell the name change committee, that I do appreciate the time and effort they put in to this. I know it's impossible to pplease everyone, and this was a difficult task.
    I'm just not sure this makes any sense to me.

    Thanks for letting me jump on my soapbox,
    enjoy Game day everyone!!
  7. vickiw

    vickiw Member

    I guess I'm in a minority here, but I think it's an improvement. Not perfect, but definitely better. I'd rather have a name that is difficult to pronounce and that people don't understand than one that is absurd and that people mistakenly THINK they understand ("I get tired too").

    I think the harder a name is to pronounce, the more impressed people are. And living in a world of acronyms as we do, I'm not worried that anyone will confuse M.E. with "me"
    [This Message was Edited on 02/04/2007]
  8. shar6710

    shar6710 New Member

    I have to admit I was a little underwhelmed. I was really hoping for something totally different but we must be pragmatic I suppose. These names are already recognized, changing them to something totally different would be a huge undertaking.

    On the bright side, I would much rather tell someone I have Myalgic Encephalopathy and have to explain it as a painful neurological condition than be apologetic explaining how CFS is much more than just fatigue. Even idiots know that brain and neurological diseases are serious.

    Shar
  9. Marta608

    Marta608 Member

    I'm with the rest of you. Pain is not the primary symptom of CFS for most of us, yet it comes first in the new name.

    I also agree with TwinMa about the ME, ME, ME part.... It's already seen as a self-absorbed illness without calling attention to ME. And then, as others said, there's the awareness campaign under CFS... A big lack of planning if you ask me - and you did.

    I made these observations early on for what they were worth.

    Marta
  10. butterfly83

    butterfly83 New Member

    My first reaction is oh lord how on earth am I going to remember that name!? i'm sleepy, i need something easier ;)
  11. cct

    cct Member

    I am not surprised.

    There is too much at stake to make a complete name change.

    All of the world-wide research, all of the abstracts, all of the history, the world-wide recognition, pending grants, insurance, social security, the revised Canadian definition, medical journals and books, tons of documents, support groups, contributions and funding, etc.

    Completely changing the name of CFS would be almost impossible.

    Do I love the new name ? . . . NO ! ! !
    Is it better than Chronic Fatigue Syndrome ? . . .YES ! ! !

    When I decided to use Myalgic Encephalomyelitis as the name for my condition in order to avoid the "I get tired too" reponse when I mentioned Chronic Fatigue, I began by practicing the pronuciation of the words "My-al-gic En-ceph-a-lo-my-e-li-tis" It took me several weeks to get the pronunciation correct.

    I am sure that if I begin to practice the pronunciation of the new name . . My-al-gic En-ceph-a-lop-athy, I will be able to train myself to say the new name correctly in a very short time.
  12. Sandyz

    Sandyz New Member

    I think its a pretty good choice considering how complex this illness is. I am hoping I can pronounce it along with the rest of you.

    Thank you Rich and name change commitee!
  13. kjfms

    kjfms Member



    encephalopathy -- Pronunciation: in-"se-f&-'lä-p&-thE

    You can go to the site below and hear the correct pronunciation also.

    http://www.m-w.com/cgi-bin/dictionary?book=Dictionary&va=encephalopathy

    I hope this helps a little,

    Karen :)

  14. Daisys

    Daisys Member

    I think it's a huge step in the right direction.

    Consider MD and MS. Those names are general descriptions that don't explain the entire illness, or the exact cause.

    I just know that now when I tell someone what I have, they aren't going to reply 'Oh, I might have that, too. I've been tired lately.'

  15. Slayadragon

    Slayadragon New Member

    I don't think we know enough about this disease (or these diseases) to know what name(s) to use.

    In any case, "myalgic" does not describe what I have. Dr. Cheney states that at least 5% of CFS sufferers have no muscle pain. I am one of those.

    I have no idea if "encephalopathy" describes what I have. (And this is not for lack of trying to find out.)

    I thus cannot tell people in good conscience that I have "M.E.", or even "M.E./CFS."

    That would be a lie.

    Best, Lisa


    [This Message was Edited on 02/04/2007]
  16. balletdancer74

    balletdancer74 New Member

    I'd rather say (which I have been since the day I got sick seven years ago) I have Myalgic Encephalopathy (I've never had a problem saying "itis" or "opathy," but I don't have brain fog or fibrofog...) which sounds more "serious" than Chronic Fatigue Syndrome which LESS describes the multitude of symptoms that I have. And most people with M.E. or whatever you'd all like to call it DO have pain or at the very least "severe achiness."

    Just like MS, there are people who have severe leg pain or no pain but discomfort or spasms. As w/ most illnesses, the symptoms vary while the "destruction" doesn't. Besides, not everyone w/ MS is in a wheelchair or has his or her legs affected. Many get MS in their arm, for example.

    As I've always said, we don't call Parkinson's 'chronic shakiness syndrome' or Alzheimer's 'chronic forgetfulness syndrome' as that would be inaccurate, insulting and totally misleading!

    The name will ultimately change again at some point in time, but for now, I thank the committee...and ME (pun intended) for using the name all this time! *grin*

    While I tend to enjoy a good discussion, I'd prefer for us to remain cohesive. We're in this "battle" for necessary and deserved attention together.

    LB32 (Leeza)
  17. Slayadragon

    Slayadragon New Member

    The "E" in "M.E." used to stand for "enceplohalomylitis," which suggested some kind of inflammation of the brain. I never saw any real proof that CFS sufferers had that, which is why I always felt like I would be a total liar if I used that term.

    Apparently the people on the committee didn't believe there was conclusive proof that CFS patients have inflammation of the brain, since they felt it necessary to change it to a different word.

    Upon re-reading the definition above, it seems that "encephalopathy" describes _anything_ wrong with the brain. I think that my manic-depression would fall into this category. I also think that mental retardation due to the ingestion of lead would. And Alzheimer's Disease. And my husband's anxiety and migraine headaches (apparently caused by a head injury suffered as a child).

    So okay. I guess I have encephalopathy, and that it would be an accurate description. If I told someone who actually know what the word meant though, I'd feel really foolish. It would be of the same specificity saying that I had "female problems." (What would that mean? PMS? Infertility? Advanced-stage ovarian cancer?)

    Also, using "encelphalopathy" rather than "brain problem" makes me feel like I'm trying to pull a fast one on people who don't know the word. So, okay. "M.E." is half devious and (for me) half a lie.

    I don't like feeling devious any more than I like lying.

    [This Message was Edited on 02/05/2007]
  18. wrthster

    wrthster New Member

    I don't see the need for everyone to try to be so creative and make it more confusing. As if people are not confused enough by the stupid name CFS. If you are going to change it, and the WHO plus the rest of the world goes by Myalgic Encephalmytis (excuse my spelling) than why not just brand it under that name?

    Having a background in Marketing and advertising, it makes sense to keep it uniform. This way the whole world is on the same page. But I guess that would make to much sense (LOL). I guess at least they tried to head in that direction. It is unbelievable!!!
  19. shar6710

    shar6710 New Member

    Am I right that you do not link your CFS symptoms to your head injury? I had a concussion less than a year before the "flu that never went away". Although I don't believe the head injury was the actual trigger I do think it somehow set the stage.

    Now that I have slept on it I think I much prefer ME to CFS and for the reasons I stated earlier. I think the Encephalopathy part is a good general description. It doesn't try to explain the cause of the condition but I do think there is enough evidence that we have brain dysfunction to include it.

    As for the Myalgic part, although pain is not normally my disabling symptom I do have significant "achiness". So if you describe this as the "flu that never went away" do you never have the achiness that generally accompanies the flu or do you just discount it as a minor annoyance as I normally do? Or did you used to have some achiness and perhaps you are controlling it with your treatment?

    If you really don't have any pain I still wouldn't worry about the "M", maybe just say you have atypical ME. You have a very analytical mind and of course that is what is causing this quandry for you. But I don't think you should feel like a liar if you are telling people the name of the condition you were diagnosed with.

    Hope this makes some sense it is early and I'm not quite my best yet.

    Shar
  20. PITATOO

    PITATOO Member

    It does sound a little better than just CFS. It is that word fatigue and syndrome that bothers me. I kinda like CFIDS as it does have an "immune dysfunction" part to it but still the Fatigue and Syndrome. I think it has more to do with the CNS but that does not seem doe be clear in the name. If it gets more notice, notaritiy etc. maybe it will be okay. Wait and see...