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POLL OPEN! Terminology, Definitions, and Criteria

Discussion in 'General ME/CFS Discussion' started by Dr.Patient, Jul 10, 2014.

?

Please indicate if you agree or disagree with each of these 5 items, thank you!

  1. Agree with Item 1

    57.1%
  2. Disagree with Item 1

    28.6%
  3. Agree with Item 2

    28.6%
  4. Disagree with Item 2

    71.4%
  5. Agree with Item 3

    57.1%
  6. Disagree with Item 3

    28.6%
  7. Agree with Item 4

    71.4%
  8. Disagree with Item 4

    28.6%
  9. Agree with Item 5

    42.9%
  10. Disagree with Item 5

    42.9%
Multiple votes are allowed.
  1. minkeygirl

    minkeygirl Senior Member

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    @Scarecrow. Can't do it. Even if I did print it, stuff like this doesn't stick in brain. I could read it 10 times and I won't get it and I won't remember it. I might as well be reading Martian. Trying is a waste of my energy. There are others here who can't understand this type of thing either.
     
    taniaaust1 likes this.
  2. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I do want it to sound as serious as the illness is, but also something that would be as accurate as possible.
     
  3. TigerLilea

    TigerLilea Senior Member

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    Personally I think it is too soon to be worrying about a new name. Until we truly understand what this illness is, how can we possibly name it.
     
    minkeygirl, taniaaust1, Helen and 4 others like this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Would not be an accurate description for most ME patients. I agree with @TigerLilea that this illness is better understood, another name change would just be more confusing.

    Sushi
     
    minkeygirl and SOC like this.
  5. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    But that is criteria A, the compulsory criteria of ICC.
     
  6. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    And the one thing that differentiates this illness from all others! (Criteria A)
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It is only one of many criteria and doesn't speak to causes,

    Sushi
     
  8. Scarecrow

    Scarecrow Senior Member

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    I'm not so sure if it is exclusively.

    A1. Agree
    A2. Immunologoical
    A3. Immunological / neurological?
    A4. Could be anything really (remanufacturing ATP (hence agree) / immunological abnormalities subsiding)
    A5. Agree

    [Edit] p.s. the numbering used refers to ICC criteria not to the five poll items.
     
    Last edited: Jul 10, 2014
  9. Mij

    Mij Senior Member

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    I feel that just going back to work whether I exercised or not would have eventually brought on a relapse. In other words, exercise causes the relapses to come back faster and the more you do the more irreversible damage it causes over time.

    Since you have been ill a much shorter time than me your chances of remission or recovery is higher.
     
    Last edited: Jul 10, 2014
    WillowJ and Dr.Patient like this.
  10. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Can you please do the poll, you don't have to do all 5 items, thanks.
     
  11. Mij

    Mij Senior Member

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    I prefer amplification of symptoms because it includes an underlying relapsing pathology. Hmm . . . not sure about incapacitation, but yeah get rid of the word fatigue for sure!
     
    SOC and rosie26 like this.
  12. Scarecrow

    Scarecrow Senior Member

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    I already did. That last list was quoting the ICC numbering and was in response to you stating that 'APPEALS' describes criteria A. I think criteria A is more complex. My fault for not making it clearer.
     
  13. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I see your point with amplification! Perhaps people can suggest an accurate word for this damned misnomer fatigue?
     
  14. Soundthealarm21

    Soundthealarm21 Senior Member

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    Dallas, TX
    I think we can add on to CFS and make it better!

    Chronic Fatiguing, painful, dreadful, I can't stand up for long periods of time, I feel like crap, my hormones are in the tank, my immune system sucks, why won't this just end, something wrong with ATP production, there are viruses swimming through me unregulated, my body won't kill mold, I can't concentrate long enough to finish typing this out Syndrome

    There we go!
     
    ahmo, minkeygirl and Little Bluestem like this.
  15. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @minkeygirl Don't worry, you are not alone and the poll is too confusing to me in the current format. I am not sure what the A,B,C,D criteria link to and, no offense to @Dr.Patient, but I hate the name Appeals. It doesn't mean anything and no one will remember it. I want a name that stresses the severity of the illness and for me the level of fatigue is often comparable to when I had mono. When I explain it that way to anyone who has actually had a severe case of mono, they immediately understand. But I know this does not help with finding the right title for the illness.
     
  16. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Sorry @Scarecrow , my fault...
     
  17. Scarecrow

    Scarecrow Senior Member

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    I don't think that fatigue is a misnomer. It's unfortunately vague, though. Fatigue is not an inherently dirty word but Chronic Fatigue Syndrome is a very dirty term.
     
  18. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I have added a link to the ICC criteria that show what the A,B,C,D are in the first post.
     
  19. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Scarecrow, I agree and do not want Fatigue removed as a criteria b/c it is at the core of the illness for me (general fatigue, muscle fatigue, cardiac fatigue, etc.) It is just the name of the diagnosis (in the US) that is horrific b/c people associate fatigue with someone who worked too hard or didn't get enough sleep. They do not understand it is a sickly fatigue in which you could drop a pen on the floor and not have the ability to pick it up or not be able to breath b/c you tried to stand up and brush your teeth.
     
    Sushi and Scarecrow like this.
  20. Tristen

    Tristen Senior Member

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    I call it "Post Exertional Exacerbation of ME" because that's exactly what it feels like. "Amplified", is basically the same......but "exacerbation" seems a bit more clinical. I don't get into measuring levels of fatigue/exhaustion, because they are far from being prominent symptoms for me....never have been. But for the extent that they do exist, yes that phrase by Dr Nancy was one of my earliest YESSSS, moments. Calling this fatigue is like calling an atomic blast a match.
     
    rosie26, WillowJ and Sushi like this.

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