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The term "Post Exertion Malaise" is also insulting.

Discussion in 'Action Alerts and Advocacy' started by Andrew, May 13, 2010.

  1. Andrew

    Andrew Senior Member

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    We all understand how the term "fatigue" is not the sum total of what this illness is about, and how this hurts us. The word "malaise" is almost as harmful. This is from the first three online medical dictionaries I checked:

    If I felt this well after exertion, I'd be jumping for joy. Because the fact is, it is rare for me to even feel this well before exertion. Who are they trying to kid.
     
  2. Sunday

    Sunday Senior Member

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    Good point, Andrew. I was happy to find the term PEM because at last someone was describing what I felt - but you're right, if you look closer, "malaise" is a dumb word to refer to us.

    Yes, I agree: I'm happy when I feel as GOOD as malaise implies. What would be a better word? Stupor? Shattering? We need more word people in here. My own informal description is, "feel like a slug on barbituates".
     
  3. Advocate

    Advocate Senior Member

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    The word "malaise" is more insulting than the word "fatigue."

    I'm glad you started this thread. The only place where I disagree with you is that I think the word "malaise" is more harmful than the word "fatigue." There are ways of measuring fatigue. How can one measure vague feelings? I detest the word "malaise." :eek:

    Malaise is what you have if you are a character in a Tennessee Williams play, and it's over 100 degrees in the shade, and you are sitting on the veranda wearing a white dress or a white suit, drinking mint julep. ;)

    Malaise sounds like lazy. Malaise sounds like you could get up and get on with your life if you really wanted to. It amazes me when PEM rolls off the tongue as easily as PMS.

    Am I alone in finding the word insulting when it's used to describe someone with CFS?

    Advocate
     
  4. Kati

    Kati Patient in training

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    Again it feels to me like branding CFS as being benign.

    Since we have little control on what comes out from these doctor's mouth, we can control what we say.

    Calling our disease ME/CFS or purely ME is up to us.
    Calling post exertional relapse instead of PEM is also our choice.

    We need to stop insulting ourselves. That's really where we're at.

    Thank you for bringing this up Andrew.
     
  5. kit

    kit

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    [​IMG]

    But advocate, that is exactly what happens to me. I overdo it just a bit, and suddenly I am overcome with the vapors and feel like I might swoon. ;)
     
  6. Mithriel

    Mithriel Senior Member

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    I have posted about this before. I hate the term post exertional malaise. WE may know what we mean by it but anyone who has dug up the garden at the weekend will believe they have post exertional malaise. I have noticed that the psyches are again taking one of our terms (like pacing) and are giving it their own trivial spin. They are equating it to overexercising when you are deconditioned so the fact we feel it is proof of their theories.

    Malcolm Hooper writes that
    Malaise was the feeling like you had the flu but it seems to have changed. Those medical dictionary definitions really devalue it.

    The problem I have is that I can't think of a good way to describe what we have. Any ideas?

    Mithriel
     
  7. Esther12

    Esther12 Senior Member

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    How dare you so trivialise the suffering of those whose lives have been ruined by post-exertional malaise. I can assure you it is no minor matter, and certainly not something which anyone would 'jump for joy' over.

    I am ever so insulted!



    You could well be right that PEM isn't a terribly good term, and creates a misleading impression. Better to emphasise it's inaccuracy though, rather than the fact you find it insulting. People can find all sorts insulting - it's usually best to just leave them to it imo. I don't think those who use the term PEM mean to be insulting and I think it's best to give people a bit of leeway before allowing yourself to feel insulted by their use of language - our words are imperfect tools and we shouldn't expect too much from them.
     
  8. Greggory Blundell

    Greggory Blundell *****

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    Pem .02?

    Post Exertional Meltdown?:Retro smile:
     
  9. Andrew

    Andrew Senior Member

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    Good point. I'll keep that in mind.
     
  10. xchocoholic

    xchocoholic Senior Member

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    Thanks Andrew,

    I've happily been using the term PEM because I finally had a word for how I felt for a few days after being active but ... you make a GREAT point here. Malaise doesn't begin to describe the fact that I'm sacked out on the sofa like a limp zombie for 2 - 3 days ... We definitely need a new name for this. I was thinking that tying it to the excercise intolerance studies done by Pacific Labs might help ... so something along the lines of what they say happens to us when we exert ourselves. It's a Kreb's cycle detox malfunction ... I can't remember the exact chemical names ...

    I'm at a loss in coming up with a better term here but maybe someone else can elaborate further ... xchoc
     
  11. Gerwyn

    Gerwyn Guest

    post exertional morbidity
     
  12. Mithriel

    Mithriel Senior Member

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    Esther you have interpreted the post wrong.

    Andrew is referring to the fact that the definition of malaise is
    Malaise: A vague feeling of discomfort, one that cannot be pinned down but is often sensed as "just not right."

    He means that if he had a vague feeling of discomfort he would be jumping for joy.

    Unfortunately, like the rest of us, he feels like death.

    If others are "hearing" malaise as vague discomfort we need to find a new description. We know what we experience, so we have to find a good way of conveying it to others.

    Andrew was not intending any insult to people who use the term post exertional malaise. It is all we have just now but we would do well to look for something better.

    Mithriel
     
  13. Esther12

    Esther12 Senior Member

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    Andrew knew what I meant. I was only playing.

    Thanks anyway.
     
  14. Adam

    Adam *****

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    Pefu

    I'm going for PEFU.

    I'll leave you to work it out. :innocent1: Well, this is a family website isn't it? :Retro tongue:
     
  15. caledonia

    caledonia

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    PEM = Post Exertional Malfunction....also known as being thrown off the Empire State Building and then being trampled by a herd of elephants.:D
     
  16. Forbin

    Forbin Forbin

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    I've found a couple of related of medical words, but the average person is not going to know what they mean. They sound more serious, though.

    1) Hyposthenia : n. An abnormal lack of strength; weakness.

    2) Adynamia: Adynamia means lack of strength or vigor due to a pathological condition. It is often associated with a range of neurological diseases such as multiple sclerosis and medial-frontal lobe lesions.

    Post Exertional Hyposthenia (PEH) ?
    Post Exertional Adynamia (PEA) ?
     
  17. xchocoholic

    xchocoholic Senior Member

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    LOL ... ok, maybe Zombie wasn't the right word. I'm definitely still alive just mentally and physically unavailable ... you could poke me with a stick and all you'd get would be a groan !! lol

    hmmm, I think Dr. Myhill has something on this too. Does she call it PEM ?

    Edited to add this info from Dr. Myhill ... For me, the area that I put in bold print is what I think PEM is and explains why it takes a few days to recover. I don't get any other symptoms than this ... KOW ...

    http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

     
  18. Mithriel

    Mithriel Senior Member

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    Not zombies, with our track record we would be allergic to brains......

    Mithriel
     
  19. Andrew

    Andrew Senior Member

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    I might have found something. Instead of malaise, it could be "exacerbation." See below

    And in our cases, our disease or symptoms are exacerbated by exertion. So the correct term (and one used in medicine) is "exacerbation." Problem is, then PEM becomes PEE. And I'm not posting all this as a joke. I wish this had turned out better. I wonder if we can rework "post exertion" so we don't have PEE.
     
  20. xchocoholic

    xchocoholic Senior Member

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    I found this article from Pacific Labs study on PEM ...

    http://aboutmecfs.org/News/PRJan09Pacific.aspx

    Here's a quote on what the testing involves. It's pretty expensive too ... $2000. :eek:

     

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