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Changing the name of a medical condition may seem pointless, but it matters a lot

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Dolphin, Mar 8, 2015.

  1. Dolphin

    Dolphin Senior Member

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  2. Snow Leopard

    Snow Leopard Hibernating

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    I agree, but just not SEID. Not without consultation of the community at least...
     
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  3. melamine

    melamine Senior Member

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    https://www.the-newshub.com/health-...ition-may-seem-pointless-but-it-matters-a-lot

    "Not only does the name lack the scientific ring you would expect of a serious condition, it also reduces the myriad of symptoms linked to Chronic Fatigue Syndrome to one- fatigue"

    The same can be said of Systemic Exertion Intolerance Disease - exertion intolerance, except that exertion intolerance also has associations with laziness instead of tiredness.
     
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  4. Sean

    Sean Senior Member

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    How do you come to that conclusion?
     
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  5. melamine

    melamine Senior Member

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    It's an opinion and not a conclusion, and although it's one I have seen expressed elsewhere, I don't consider opinions to equal conclusions no matter how many people share them.
     
  6. Sean

    Sean Senior Member

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    Has the term 'exertion intolerance' been previously associated with laziness (or psychopathology, or scams, etc), particularly in relation to ME/CFS?

    I had never heard that term before the IOM report, in any context, so to me it has no previous associations at all, beyond the literal generic definitions of the words. To me that is one of the attractions of the term – it doesn't have a history.
     
    Last edited: Mar 9, 2015
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  7. alex3619

    alex3619 Senior Member

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    Not anything without consultation of the community. We have had a gut-full of being railroaded. No matter the intentions, when we are not consulted from the beginning we feel disempowered, ostracized, and put down. Its almost as if they want us to resist their efforts. Which makes part of me think ....
     
  8. alex3619

    alex3619 Senior Member

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    Yes, that is is a plus. However, the term "exercise intolerance" is similar and often confused with deconditioning. Also, the babble brigade be working to bring the new term under their tender, loving, care, just like a black widow spider.
     
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  9. Kati

    Kati Patient in training

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    I don't think we could get the whole community to agree on anything really. Sorry to sound negative.
     
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  10. alex3619

    alex3619 Senior Member

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    I agree. Its not necessary to get 100% agreement though. The issue is the 100% ignoring us, or the 99% ignoring us when we have some minimal input.
     
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  11. melamine

    melamine Senior Member

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    see Alex's reply above. "literal generic definitions of the words" has never been the problem.
     
  12. Starlight

    Starlight Senior Member

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    I have mentioned the name change by the iom to a number of people and have been surprised by the positive response.I have experienced a new respect and greater understanding because of it.I mentioned it to one doctor and saw an immediate change when I mentioned tthat this was recommended by the IOM.My daughter and I have been ill for a long time and we feel that the new name more closely describes our lived experience of the illness.I welcome the change in attitude we have encountered. I feel that PEM is a crucial part of this illness that has been very poorly understood and people seem to understand exertion intolerance better so I'm glad it's flagged in the name.
     
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  13. Sean

    Sean Senior Member

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    I think we can take that as a given, whatever name or definition is used.
     
  14. melamine

    melamine Senior Member

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    My impression of positive responses is that they have everything to do with everything other than the name change. As soon as you attach something like "recommended by the IOM" and give the reality of the disease the light of day, perceptions change.

    "people" is who? You have evidently had a good experience with the new name and I would not argue with the reason you've expressed for preferring it to myalgic encephalomyelitis or chronic fatigue syndrome.
     
  15. melamine

    melamine Senior Member

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    So to clarify, what you are saying is that the perceptual aspect of the name and definition don't matter. But back to the point made in the article that I was responding to:

     
  16. Snowdrop

    Snowdrop Rebel without a biscuit

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    That suggests it's not about the name but about the 'authority' recommending it and validating it as a real thing whatever they named it.

    I had no positive responses from the name. Mind you, my target audience is ordinary people not professionals. To me a name won't matter for professional acceptance. They only need the authority to tell them the research says 'XYZ' so here's what to think about the issue. Whereas ordinary people don't pay any attention to that and you want something that is easy to say and remember. And it makes it harder to spin comments like 'yeah I'm tired too, I hate exercise, I feel ill and need a vacation or whatever'.

    American's are stuck with the name for the time being but I still think that we could use what has been referred to as a 'nickname' and call it Ramsay's disease which is SEID much the way people use Lou Gehrig's disease which is ALS.

    EDIT: If we are asked to describe Ramsay's disease; instead of talking about exertion or fatigue we could say it's a disease that disrupts the ability to create new energy.
     
    Last edited: Mar 9, 2015
  17. Dolphin

    Dolphin Senior Member

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    Agree.
    There are people who only want myalgic encephalomyelitis.
    And there are people who don't want it.

    Some people in either camp would take myalgic encephalopathy but many (particularly in the myalgic encephalomyelitis camp) won't.

    In the meantime, "chronic fatigue syndrome" will continue to be the main term used by the medical profession.
     
    Last edited: Mar 9, 2015
  18. Mij

    Mij Senior Member

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    The problem I have is that I'm afraid Exertion will be replaced with Exercise by the mainstream and doctors.
     
  19. Dolphin

    Dolphin Senior Member

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    Except we're not sure that this is the case.
     
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  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    Since that's how it feels for me experience wise I'm fine with describing it that way not as a scientific explanation but as a way for others to understand how it is experienced.

    Even things that are 'known' to be true get updated when a more accurate understanding comes along.
    I'm not looking for a scientifically accurate explanation since one doesn't exist, yet there is the need for others to understand this illness beyond 'fatigue' 'exercise phobia' 'lazyness' and even 'exertion intolerance' . Most of the people I know are not scientists/science oriented. Nor do they have the inclination to absorb information through facts. As an example ask a non-science person, what is Parkinson's? They 'know' what it is but they don't 'know' what it is. they know it's real and they can name some symptoms and maybe even that they think it has something to do with the brain and dopamine. The actual aetiology really isn't important to them. what is important to them is they don't have it, they don't want it or they may know someone who does have it and may want to know how to help that person with everyday living.

    This is true of so many people. That's not to say that they shouldn't be beholden to science fact just that an explanation that gets to the heart of the experience of the illness can suffice in the absence of better information for people who are not looking for the latest science facts of any given disease.
     
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