The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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What Should This Disease Be Officially Called?

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

  1. slayadragon

    slayadragon Senior Member

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    In this blog, Professor Leonard Jason proposes that rather than just adopting SEID, the government should take into consideration patient input when deciding on what name to use.

    http://blog.oup.com/2015/02/disease-name-chronic-fatigue-syndrome-me/

    Obviously, many patients favor the name ME.

    But (since the IOM report questions whether ME is appropriate), I think it would be useful to come up with alternative names that patients might also find acceptable.

    For instance, many people are now talking about the idea that "Ramsay's Disease" might be an acceptable name.

    Hopefully if we can come up with alternative names that are better, the government will consider adopting them.

    What other names are worth considering?

    Thanks for your help.

    Best,

    Lisa Petrison
     
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  2. GracieJ

    GracieJ Senior Member

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    I think we should get behind Ramsay's Disease to make things easier moving forward. There is no reason for it not to be an exception to the rule about no longer using names. It would stop a lot of the in-fighting as well as we go forward.

    What else is there that is not on the list of 100 possibilities that were considered?

    My next vote would have the words neuro immune included.
     
  3. slayadragon

    slayadragon Senior Member

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    As background, I'm writing a survey which will be distributed widely within the community.

    (My Ph.D. is in marketing and I have a lot of experience with survey design. And am working with others on the project.)

    The wording will be something like below. Suggestions for improvements welcome.

    Just presenting two choices seems like the survey is stacking the deck. I'd like to have at least a few more choices for people to evaluate.

    So suggestions of names to include would be really helpful.

    Names that were considered by the panel and rejected would be fine.

    But I don't think it should have any names that have already been widely used and not been hits (e.g. CFS, ME/CFS or CFIDS).

    *

    Following is a list of names that conceivably could be used instead of the proposed name SEID. Which of the following would possibly or definitely be acceptable to you for this purpose? Please check all that apply.

    * Myalgic Encephalomyelitis (ME)
    * Ramsay's Disease
     
    Last edited: Feb 16, 2015
  4. slayadragon

    slayadragon Senior Member

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    To start out with, I've heard "Myalgic Encephalopathy" suggested recently. Should that be on the list?
     
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  5. Wildcat

    Wildcat

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    .
    For now I go with Myalgic Encephalomyelitis. I thought that it was getting rid of chronic fatigue syndrome that was the priority, not getting rid of ME-itis.

    I can't think of a new name but having the words 'Neurological' (or 'Neuro'), 'Immune' and 'Disease' in any new name should be given high priority.




    .
     
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  6. mango

    mango Senior Member

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    How about Mirza's disease? (Sophia Mirza)
     
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  7. slayadragon

    slayadragon Senior Member

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    When I wrote my blog on the IOM report, here is a list of alternative names that I sort of made up off the top of my head. But if anyone likes any of them, they could be included.


    >So perhaps we should be considering something like Ramsay’s Disease. Or BCP – Bell Cheney Peterson Disease. Or Florence Nightingale Disease. Or Sophie Mirza Disease. Or Vanessa Li Disease. Or Laura Hillenbrand Disease. Or Royal Free Disease. Or Lake Tahoe Disease.
     
    Last edited: Feb 16, 2015
  8. Min

    Min Guest

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    We already have a name, Myalgic Encephalomyelitis. The problem has been the deliberate downplaying of a serious neurological illness by renaming it chronic fatigue syndrome or myalgic encephalopathy.
     
  9. Mij

    Mij Senior Member

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    The more I think of Ramsay's Disease, the more I am in favour of the name. There is no way to modify or trivialize the illness with this name. The name is what it is.
     
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  10. lnester7

    lnester7 Seven

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    I am ok with:
    ME
    Ramsey.
    Mirza (both names is too long).
     
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  11. KIO

    KIO

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    Last edited: Feb 16, 2015
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  12. Hip

    Hip Senior Member

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    I understand about CFS being a trivialization, but why are you saying that renaming it "myalgic encephalopathy" would be downplaying it?
     
    Last edited: Feb 16, 2015
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  13. taniaaust1

    taniaaust1 Senior Member

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    Yes that should be on the list.

    I prefer that or the other ME name before anything else. One issue I have thou is I certainly do not want that new definition to be put onto either of the ME names as the new definition dont even fit me right and Im a severe ME case.

    Putting the new definition onto ME will just further confuse things. So I really hope that isnt done.
    .........

    Ramsey's Disease Would be my choice after the ME names in what to call the illness I have (but once again I wouldnt want that put with the new definition.. that definition probably would have Ramsey turning in his grave .. I assume he's deceased. I wouldnt mind Ramsey's Disease thou put with the CCC or the international ME definition.

    How can we agree to a name when we dont even like the definition which is going to be put onto it and may not even agree that its an actual ME definition??? I think that issue needs fixing first.
    ...........

    After those three names (Ramsey's or one of the ME ones).. my next choice would be any name which sounds serious, which doesnt focus on some symptoms over the others (so best probably no symptoms on the name!), which isnt a long name as many of us have trouble with handwriting. Its also needs to be easy for ME patients to say. I think all those things should be considered when choosing a name.
     
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  14. Nielk

    Nielk

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    I agree with Tania that a proper name should go with a proper criteria. The IOM criteria does not describe the neuro immune disease ME.

    That is why most of us rallied for the CCC and the name ME.

    The criteria and name should go hand in hand.
     
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  15. Sean

    Sean Senior Member

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    Do you mean most did before the IOM report? If so, then probably true.

    If you mean after the IOM report, then it is not clear to me that is correct. (At least, it is too early to call.)
     
  16. Nielk

    Nielk

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    Yes. I meant before As far as now, there is still a growing number of advocates and patients who are in resistance of this report that was forced on us.
     
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  17. 5150

    5150 Senior Member

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    The concept of Mirza is admirable, but it sounds a lot like MRSA super bug. That could prove a problem.
     
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  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Fed Up With Lying Scumbags Denying This Disease

    Ok, FUWLSDTD is nearly unpronounceable but hey, it's closer to the truth than SEID :p
     
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  19. 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
     
  20. Wayne

    Wayne Senior Member

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    I've long thought a name emphasizing the spectrum of neuro-endocrine-immune dysfunction would be best--but likely too long or complex to relay a readily understood concept . I then began to think a simplified version might be to focus on the "immune" aspect, but still hopefully convey the profound consequences of having the disease. What I came up with was "Immune Deficiency Syndrome", or IDS. If people saw it as a cousin or close relative to AIDS, perhaps it would be given the instant credibility we would all like to see happen.
     
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