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Name preference? CFS, ME-itis (2 versions), ME-opathy, SEID, or Ramsay

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Sean, Feb 16, 2015.

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Name preference? CFS, CFIDS, ME-itis, ME-opathy, SEID, or Ramsay

  1. CFS (Chronic Fatigue Syndrome)

    0 vote(s)
    0.0%
  2. CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome)

    0 vote(s)
    0.0%
  3. ME-itis (Myalgic Encephalomyelitis)

    18 vote(s)
    25.0%
  4. ME-opathy (Myalgic Encephalopathy)

    4 vote(s)
    5.6%
  5. SEID (Systemic Exertion Intolerance Disease)

    18 vote(s)
    25.0%
  6. Ramsay's Disease (or Ramsay Disease)

    26 vote(s)
    36.1%
  7. Other – eponymous (Please post any suggestions in the thread.)

    1 vote(s)
    1.4%
  8. Other – non-eponymous (Please post any suggestions in the thread.)

    2 vote(s)
    2.8%
  9. Don't know / No strong preference

    3 vote(s)
    4.2%
  10. ME-itis 2 (Myalgic Encephalitis)

    0 vote(s)
    0.0%
  1. Sean

    Sean Senior Member

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    Yet another name poll, to hopefully help this evolving debate along.

    My preference is Ramsay's Disease, until we are sure of the primary underlying pathology.

    ----------------------------------

    An eponymous name has one huge advantage in that we don't have to keep changing it as the knowledge about the disease improves, and spend our lives arguing about whether it is technically accurate.

    I have no idea what the late Mr Ramsay would have thought. He may well have been horrified at having it named after him.

    If we are going to push for an eponymous name then I do think we should first check with the person, or their surviving family, that it is okay with them to use their name in this manner. If they object, then it is not an option for us, far as I am concerned.

    I have deliberately not included other eponymous options, like Mirza or Cheney-Bell, because there are literally dozens of those possibilities, and the most commonly mentioned one seems to be Ramsay. But this could be the subject of a separate poll, just on eponymous names.

    One option for an eponymous name is to name it after a place, not a person. For example, Royal Free Disease, after the hospital where Ramsay did his work.
     
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  2. Ember

    Ember Senior Member

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    My preference would depend on which disease or set of criteria we're trying to name.
     
    CantThink, mango and Nielk like this.
  3. nandixon

    nandixon Senior Member

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    Our best chance may be to make the new name as close as possible to "Systemic Exertion Intolerance Disease," but have it sound like a real disease (finally). These are four possibilities:

    Systemic Exertional Neuroimmune Disease

    Multisystemic Exertional Neuroimmune Disease

    Systemic Exertional Neuroinflammatory Disease

    Multisystemic Exertional Neuroinflammatory Disease
     
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  4. Sean

    Sean Senior Member

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    Whatever disease you think you have, what name do you want it called?
     
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  5. Ember

    Ember Senior Member

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    CFS has the highest prevalence. Using your voting standard, wouldn't CFS patients then be choosing a name for ME?
     
  6. Sean

    Sean Senior Member

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    Not going to play word games with you, Ember. The poll question is clear enough, with (I believe) enough options for everybody to have their fair say.

    If you don't want to be part of the poll, that is fine. But I am asking a serious question in good faith to find out the range of preferences within the patient community.
     
  7. Ember

    Ember Senior Member

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    I'm not "playing word games." Are you assuming that the diseases being considered should have only one name? It's a serious question--one that must be addressed in any upcoming proposal to change ICD codes.
     
    Last edited: Feb 17, 2015
  8. Sean

    Sean Senior Member

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    I am asking the question in the context of the IOM report, so whatever it is they are trying to describe, regardless of whether you agree with their criteria or the name they recommend.
     
  9. Ember

    Ember Senior Member

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    Your response completely changes the way that I would answer. I have ME, and I would not want the IOM criteria to be named ME, nor do I believe that is what they are trying to describe.
     
    Last edited: Feb 17, 2015
  10. Kati

    Kati Patient in training

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    I have not answered the poll. . I disagree with Ramsey because when you try to explain the name of the disease to suspicious physicians, then they revert to "chronic fatigue syndrome".

    The experts are saying that ME is not representative of this disease. It is not because Sophia Mirza has been posthumously shown features of encephalomyelitis that each one of us will present with these features. Therefore, it's not going to fly with mainstream doctors.

    I have said it before and will say it again- our perfect name has not come up yet. Give us 100 millions in biomedical research and let's decide after that funding has been spent and papers published.

    So SEID, as an interim name is not too bad, as long as physicians start their dissemination work very soon. From what I read on Medscape comment board, there are many, many doctors that have a lot of learning to do. :bang-head:
     
    Last edited: Feb 17, 2015
  11. Forbin

    Forbin Senior Member

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    I guess "Despicable ME" has been taken. ;)
     
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  12. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    UK
  13. Sean

    Sean Senior Member

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    Yes, I am aware of that. I am simply trying to find out the preferences of the patient community.
     
  14. Dolphin

    Dolphin Senior Member

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  15. msf

    msf Senior Member

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    How about the term KDM proposed in one of his videos - Gastrointestinal-Immune-Neurotoxic Syndrome, or GIN for short? If we're going to have a joke for a name, then we might as well have a good joke (KDM went on to say it was unlikely to be adopted but would be quite apt, since you can't have gin without tonic and that's what his patients lack). It's also a much better cover-all definition than the SEID one, in my opinion.
     
  16. msf

    msf Senior Member

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    Ok, despicable ME was quite good too.
     
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cornwall, UK
    Why doesn't anyone talk about myalgic encephalitis? I suggested it twice in another thread and no one referred to it. It's a third possibility for 'ME'. Here are some definitions for encephalitis. Here is a thread which mentions the likelihood of inflammation in the brains of pwME.
     
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  18. Sparrow

    Sparrow Senior Member

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    Until we can pin down more specifics with further research, I like the proposed new name (SEID). I feel like they've listened to what's important.

    It says "disease" rather than "syndrome", which lends an appropriate tone of significance.

    And it focuses on post-exertional malaise on a system-wide scale as the central and defining symptom of the illness.

    I know that not all of you share my relief with what they've gone with, but I'm personally very pleased.
     
  19. msf

    msf Senior Member

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    So Sparrow likes SEID?

    I think that narrow focus is what displeases many.
     
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  20. Sean

    Sean Senior Member

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    I missed that one. Sorry.
     
    MeSci likes this.

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