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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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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. gracenote

    gracenote All shall be well . . .

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    What about Post Exertion Symptom Exacerbation? That would make it PESE (maybe a little better than PEE).
    WillowJ likes this.
  2. Greggory Blundell

    Greggory Blundell *****

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    Is there any merit to qualifying it after the group who help validate the condition? i.e., Pacific Lab something? Instead of a symptom approach. I dunno. Just throwing out the thought...
  3. Andrew

    Andrew Senior Member

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    . Sounds good to me!

    The problem with this is we don't know if the Pacific Lab results can be used as a marker. So I think it's better to have a term that describes the symptom in a general way.
  4. Greggory Blundell

    Greggory Blundell *****

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    Andrew, good point. It had just occurred to me maybe we were levying artificial - or even misdirected - constraints when we discussed naming this evil penalty for trying to, well, live a bit beyond our cell. I mean, how do you qualify this in three or four words, and adaquetley and in compelling fashion convey its significance? Maybe the approach should be a closed-circle one; whereby we apply a name to this unnameable condition that invites curiosity and then subsequent discussion. Too convoluted? Yep. It was easier when I thought with clarity. :)
  5. jspotila

    jspotila Senior Member

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    We definitely don't want PEE! What about PER - post-exertional relapse?
  6. gracenote

    gracenote All shall be well . . .

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    I'm not sure about "relapse."

    I'm not sure if we could call what we have before PEM sets in as "improvement." It's our baseline crappy, and then it gets worse!

    I thought of Exertion Induced Exacerbation. That would be EIE. Makes me think of E I E I O . . . With a quack, quack here . . .
  7. Greggory Blundell

    Greggory Blundell *****

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    I'm sorry, I well know I am posting here as an unknown so I hope no one minds. PER is good, my concern would be those who might infer from "relapse" that we were fine before our exertion and the exertion did not worsen an already grave cluster of symptoms/conditions, but just sent as careening back to old resolved issues. Semantics really do matter, particularly with us, as do connotations. Anything dealing with nomenclature becomes unduly dicey. Shouldn't be this way. Sorry.
  8. gracenote

    gracenote All shall be well . . .

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    Your thoughts are welcome here Greggory. And so are you.
  9. starryeyes

    starryeyes Senior Member

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    I thought of that while reading this thread grace, went to the next page and there was your post, right at the top! This is what I'm calling it from now on.

    PESE: Post Exertion Symptom Exacerbation.

    Now please get out of my head. ;)
  10. Andrew

    Andrew Senior Member

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    The word "relapse" implies that we affected by a condition that we got over in the past. Most of us don't get better between crashes. We are sick all the time, and exertion exacerbates our illness.

    OTOH, I do know pwc who recovered (or seemed to) and then got sick again. But I don't think that's what PEM is referring to.
  11. jspotila

    jspotila Senior Member

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    Hmm, this is a good point. But what about the use of "relapse" in MS? Those with relapsing/remitting MS are not healthy between relapses. But I think it would be very interesting to see how non-PWCs react to "relapse." It could be that there would be an assumption of healthy baseline.

    Maybe we should switch to WTMUS (worse than my usual sh*tty). :innocent1: (hope the profanity did not offend)
  12. gracenote

    gracenote All shall be well . . .

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    I love WTMUS! Might want to add an M for "much worse than my usual sh*tty!" :angel:
  13. The Phantom

    The Phantom Member

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    post exertional exhaustion

    I agree that malaise is a bad term to use. I've used the phrase post-exertional exhaustion, but that has the PEE problem. So I looked up exhaustion in an online thesaurus and got the following synonyms:
    Maybe debility? Doesn't seem to me to have much punch.

    Roget's doesn't do much better. The only other possibility that maybe applies is prostration, because most of us do lie down when we feel like this, but it seems a bit effete. Based on what I experience, exhaustion is the best description. Too bad it starts with E. Maybe we could shorten it to PE, since post-exertional is really one word.
  14. Greggory Blundell

    Greggory Blundell *****

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    Gracenote - thank you. Can't shake the idea that instead of vertical thinking, we need lateral. But thinking outside the box isn't my thing these days. Maybe it's easier just to slide down into irony and embrace that which worsens our disease and name it appropriately: Reeve's Retaliatory Reaction. It's got it all: names, vendettas and the Three R's. :)
  15. rebecca1995

    rebecca1995 Apple, anyone?

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    Someone in an early CAA thread--perhaps the pamphlet one?--suggested Post-Exertional Decline. I always liked that because it captures the loss of function that occurs after exertion (at least for me.)

    For those who want to connote flare as well as deficiency, how about Post-Exertional Decline and Symptom Exacerbation?

    PEDASE :D
  16. Greggory Blundell

    Greggory Blundell *****

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    "Decline" seems gradual. I think you are onto something, though. For accuracy sake, for me, I plummet, whether it's 8 hours or 48 after whatever, even if it's just thinking hard. Whenever it decides to swoop in, it's dramatic, and it has my attention. Tomorrow ought to be interesting, but you all know that refrain. So not trying to be argumentative. These are all good suggestions. And truth be told, PEDASE kinda resonates.
  17. Greggory Blundell

    Greggory Blundell *****

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    re: Phantom, sorry I did not reply to you in my just earlier response. I've blinders on sometimes that force me to focus solely on one thing, and one at a tome. I would steer away from anything to do with being exhausted. The ties to fatigue and malaise are too strong. Moreover, it does not touch upon the other crap that assails us. I've this sensation of poisin coursing through all of me, that is impossible to share with healthy individuals, and this pressure behind my eyes that renders writing a joke - and all the usual suspects, but if I try to read or strategize something, or walk when I should not, or talk too long the penalty box Life today thrusts me into is obscene and Dante-esque. Sigh. I just want people to know.
  18. Greggory Blundell

    Greggory Blundell *****

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    Umm, forgot to tie this together: Somehow we've to covey a multisymptom disease is dramatically - sometimes irrevocably - worsened through heightened anything. Hopefully I'll get better at this...
  19. gracenote

    gracenote All shall be well . . .

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    Hey Greggory, you're doing great. Keep posting. You have good ideas.
  20. CBS

    CBS Senior Member

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    I've been in a bit of a hole for the last three weeks. Just starting to feel a bit better yesterday so I thought I'd over do it this afternoon. Now I'm WTMUS again!

    Thanks, Jennie. I needed the laugh!

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