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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Live webcast IoM meeting Jan. 27th 1:pm starting

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 27, 2014.

  1. Firestormm

    Firestormm Guest

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    @justinreilly according to Tuller there was an attempt at encephalomyelitis in the US:

    So I think the nomen is known though it's a shame that Tuller couldn't define its' meaning accurately:

    He missed out muscles.

    http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome

    I think there will be a fight still over the brain and spine inflammation. And about which discipline should take ownership.

    But as there are no further public sessions that I am aware of - I guess we have to wait for 12 months now to hear anything.
    aimossy likes this.
  2. leela

    leela Slow But Hopeful

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    Nit-picking here, but it is pronounced PRIM-er, not PRIME-er.
    SOC likes this.
  3. Ember

    Ember Senior Member

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    From English Language and Usage: "Apparently this situation is only recognizable to American English speakers. I've only ever heard it pronounced with a short 'i,' but this seems to be completely unheard of to British English speakers." As a Canadian, I use the British pronunciation.
    leela likes this.
  4. Sing

    Sing Senior Member

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    Names:

    My view is that ME, and even more so ME-itis, are highly suggestive of a psychogenic narcissistic condition. I am very sorry to say this because I wish it weren't a case of from the frying pan, with CFS, and into the fire, with ME. I feel even more ashamed to call what I have ME than I do CFS just because of how the word ME implies a condition of morbid self-centeredness. This is what has been projected onto us all along and I am as extremely desirous of slipping this destructive, false yoke as all the rest of us. The long complicated name referring to inflammation in the brain and muscles also seems embarrassing to me since it is not established that this is the problem medically, and further embarrassing because it seems as though we patients are wanting to cover our nakedness--having an unaccepted, unestablished disease--by latching on to a name which is far too much of one. Imagine someone very poor and declassé who gets invited to a high class event of social insiders. She immediately falls into the error of gross over-dressing for the occasion, and so advertises to all her nebulous origins. The end result is more shame.

    For these reasons, of the existing possibilities the only one which I find appealing is Ramsay's Disease. That name seems solid and interesting to me, though it does not define this illness anymore than the others do.
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  5. Bob

    Bob

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    I think it would be better if they adopted only the initials: "M.E." (Instead of the full name.)
    One advantage of using 'ME' is that people are already familiar with it.

    But I quite like "Ramsay's disease", and perhaps that would be my preferred name for the illness.

    And I quite like "Neuro-endocrine-immune disorder disease" (NEID) because it describes the various systems of the body that are affected, and it makes it very clear that we're not talking about chronic fatigue.
    Last edited: Jan 29, 2014
    Iquitos, Valentijn and Sing like this.
  6. SOC

    SOC Moderator and Senior Member

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    I'm with @WillowJ on Ramsay's Disease. It's not going to happen. Scientific naming is simply not done that way anymore. We're wasting our time supporting it as a possibility and making ourselves look ignorant of current practice.

    Neuro-endocrine-immune disorder (NEID) has the value of describing the illness as well as a pronounceable acronym. Not sure I'm crazy about that pronunciation, though. I don't really want to say I have "need". ;) But that's a relatively small point in the scheme of things.
  7. Firestormm

    Firestormm Guest

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    @SOC Probably better than PENE which I understand means penis in Spanish ;)
  8. Bob

    Bob

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    Interesting that we're even discussing the possibility of an official name change!
    Is this a first?
    Last edited: Jan 29, 2014
    Valentijn likes this.
  9. Nielk

    Nielk

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    Dr. Ramsey actually called it Myalgic Encephalomyelitis. http://www.name-us.org/DefintionsPages/DefRamsay.htm
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  10. Purple

    Purple Bundle of purpliness

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    I don't like the sound of the word 'disorder'. 'Disorder' sounds to me like 'nothing much wrong'. NEID - neuro-endocrine-immune disease would have the same acronym.
  11. SOC

    SOC Moderator and Senior Member

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    Oh dear! :wide-eyed: We get stuck with the best names in this illness, don't we? :cautious:
  12. WillowJ

    WillowJ Senior Member

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    @SOC , since pronunciation in English is somewhat arbitrary anyway, we could say NEID was pronounced like "neighed" :woot:

    Or skip the "endocrine"; I think there is some of that but I think the cortisol stuff, which everyone thinks of first, is a consequence of being profoundly ill for a long time, and not an actual central pathology of this particular disease.

    Though NID doesn't sound helpful if said as a word, but N.I.D. sounds more like a health agency, or a special kind of ID card, which is probably not all bad...
    justinreilly, Valentijn and SOC like this.
  13. WillowJ

    WillowJ Senior Member

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    that is cool, but not the first

    2003: http://www.iacfsme.org/CFSNameChange/tabid/99/Default.aspx
    http://cfids-cab.org/cfs-inform/CFS.name/cfs.name.html
    CAA's 2002 statement: http://www.cfids.org/archives/2002/2002-3-article02.asp (with link to page with more links to the history of the 2003 recommendation)

    2007: http://www.cfs-healing.info/name-change.htm

    ETA:
    My favorite from the 2007 meeting: Neuroimmunological entropy syndrome (NES)
    not really, as I don't think "entropy" is a medical term, but, it's descriptive. ;)

    ETA 2: another link:
    http://phoenixrising.me/resources/chronic-fatigue-syndrome-name-change-efforts
    Last edited: Jan 29, 2014
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  14. Valentijn

    Valentijn Activity Level: 3

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    Instead of (or in addition to) having e-penises, we can have ME-penises? :woot:
    aimossy, SOC, Nielk and 1 other person like this.
  15. Firestormm

    Firestormm Guest

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    There's the pathological proof we have been missing all this time - ladies with penises! ME is real :jaw-drop: :rofl: :rofl:
    aimossy, Cheshire and Valentijn like this.
  16. Nielk

    Nielk

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    At least we might get some attention now!
  17. Valentijn

    Valentijn Activity Level: 3

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    Biomarker! Score!
    aimossy, Sing, SOC and 1 other person like this.
  18. Bob

    Bob

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    lol

    Is there a research paper for this? (Joke.)

    (How on earth did the discussion end up here!?!)

    :)
    Last edited: Jan 30, 2014
    Valentijn and Sing like this.
  19. SOC

    SOC Moderator and Senior Member

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    NID is not bad, although a bit too much like small insects. :p Still, all-in-all it fits and feels more accurate to me than NEID.

    Let's see, what else works? .... Acquired Immune... no wait, that's taken.....

    I'm still favoring one someone (@Mark?) came up with a while back -- WTH Disease. I dunno about everyone else, but that's pretty much a theme in this illness for me. Every time I turn around it seems like there's some weird new symptom cropping up... wth? Just when I've fought back some ground, some *&%$ happens and it's a downhill slide again...wth? Just when I think I've figured it out, I figure out I'm all wrong. (I don't have infections. Yes, I do. I don't have OI. Yes, I do. I don't have immune dysfunction. Yes, I do. I don't have methylation problems. Yes, I do.) WTH?
    aimossy and WillowJ like this.
  20. Sing

    Sing Senior Member

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    Sometimes we just need to break out into some play. That IOM meeting was intense...

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