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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. biophile

    biophile Places I'd rather be.

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    I agree that the term PEM, the acronym of which I have occasionally used because it is the most commonly recognisable(?), can be insulting when compared to the actual symptom exacerbation that does occur.

    Although "decline" does sound gradual, post-exertion symptom exacerbation can take days to fully manifest so may still be an accurate depiction.
    WillowJ likes this.
  2. Jessrose21

    Jessrose21

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    So far these are my favorites:

    Post-exertional debilitation (PED)
    Post-exertional adynamia (PEA)
    Post-exertional hyposthenia (PEH)

    They're all better than malaise. Love the pic of Scarlett! Perhaps I just need to wear a vial of smelling salts around my neck for when I feel faint. Ha.
  3. Andrew

    Andrew Senior Member

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    Is there another way to say "post exertion?"
  4. IamME

    IamME Too sick for an identity

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    Exertional?

    (The "post" thing is not always appropriate; if you can't finish a task because of rapid decline in strength it's maybe best to not call it post, as it infers you can do as much as you like on one day, but that wouldn't apply to many.)

    Post-exertional dysfunction? Loss of functioning?

    Loss/reduction of homeostasis?

    Decompensation is used in heart disease, but it's also used in psychology IIRC. An advantage is that reduced activity is compensating rather than merely "doing what tired people do" and so a better reflection of the presentation.

    Dysequilibrium can be used in a general sense but I think, also has a specific meaning for loss of balance or dizziness.

    I don't think "post exertional symptom exacerbation" or the like works well because it's not only an increase in symptoms (subjective) but a loss of functioning that's experienced, ie. loss of muscle strength, and perhaps other signs (eg. muscle spasm) on an individual basis.

    I've never really liked "malaise" that much for the reasons Andrew mentions; not quite as woolly and benign as "fatigue" but subjective and trivial-sounding relative to the actual experience. People can be totally immobilised and in severe pain, which is a far cry from "feeling out of sorts". The classic post-exertional sign of ME common to all cases was the reduction in muscle strength with delayed recovery which CFS seems to have forgotten or made disputed.

    Gerwyn's Post Exertional Morbidity I liked, and it preserves "PEM".

    Descriptions and terminology have to one way or the other reflect that:

    • ME is an exertional disease
    • Exacerbation can occur with trivial activity dependent on severity
    • Exacerbation both reduces functioning directly, and increases symptomology
    • The effects are paradoxical when compared to deconditioning or normal health e.g. activity should help sleep but pwME respond with increased insomnia or sleep reversal (but this requires a whole section!)
    • There is a very delayed recovery time; there's a possibility the effects can be permanent.
    • Very small, frequent amounts of overactivity can accumulate over a long time
    • Exertion is not the only cause of worsening but it's likely the worst, and in absence of disease treatment, should be the most avoidable with appropriate support and advocacy
    WillowJ likes this.
  5. Marco

    Marco Old blackguard

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    I have problems with malaise.

    As has already been stated the PEM is far from just being just increased fatigue. Its an exacerbation of all the usual symptoms including mental and physical exhaustion, nausea, increased cognitive problems, increased sensitivities, increased pain, mood problems, and feeling poisoned etc etc.

    I have even more of a problem with post-exertional. If I recall correctly the original PEM description from Ramsey ME referred to an exacerbation of symptoms following a range of triggers including physical and mental effort, psychological stress, heat stress and other overload phenomena. Unfortunately the research focus has tended to be on exercise studies, probably because they are easier to design and control. But the end result is that PEM has been inextricably associated with physical effort - hence the psych's theories of deconditioning.

    I can appreciate the need to use recognised acronyms but not then they have been so devalued in common parlance that they no longer accurately reflect what is going on.

    To be completely accurate I would suggest :

    Overload induced multisystem symptom exacerbation

    Snappy?

    Or Overload Amplified Morbidity
  6. Kati

    Kati Patient in training

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    I honestly really appreciate that a group of patient is taking in their own hands the change of terminology to make it LESS INSULTING to all of us. After all we are the real professionals that have to explain our symptoms the best we can.

    I also agree we need more patients on the CFSAC committee to better represent us.
  7. Forbin

    Forbin Forbin

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    "Disproportional Exertion Deficit" ?

    "DED" ?

    Not sure if I like the sound of that. On the other hand, maybe it gets the point across...
  8. jspotila

    jspotila Senior Member

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    Maybe "malaise" is not the only bad word here. Maybe we should look at "exertional" too? I'm without my OED, but online dictionaries are defining exertion as "The act or an instance of exerting, especially a strenuous effort." or "the act or an instance of exerting; especially : a laborious or perceptible effort."

    We all know that for us, strenuous can mean getting out of bed and going to the bathroom, but I sincerely doubt that the non-PWC audience would get that. Perhaps "exertional" should be replaced with "activity"?

    PAR = post-activity relapse?
    PAE = post-activity exacerbation?
    PAM = post-activity morbidity?
  9. Mithriel

    Mithriel Senior Member

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    Activity related symptom exacerbation.

    No wait....damn :(

    Maybe activity consequent symptom exacerbation or activity related prolonged symptom exacerbation, or are they rude in some other language?

    Mithriel
  10. Advocate

    Advocate Senior Member

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    Even though "relapse" might accurately describe what can happen in CFS, I have heard it met with sneers in relationship to CFS. The reaction is, "How dare you compare your trivial malaise-y whiny whatever with a serious disease like MS? Or cancer."
  11. Andrew

    Andrew Senior Member

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    I think both of these go a long way to improving over the original.
  12. jewel

    jewel Senior Member

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    Agreed that the word "malaise" does not describe the phenomenon and that it is INSULTING! I also see Marco's point, which if I am reading it correctly, is that over-exertion can cause an exacerbation of symptoms, but so can other "triggers." As an example,some of us have weather triggers; I for one can expect to feel significantly worse after damp weather or after windy days, regardless of temperature. Beautiful, balmy, excessively (to me) breezy days are followed by days/weeks of increased symptoms. Several windy days in a row... more time in the death-knell of worsened functioning.... So...Overload Amplified Morbidity works for me... But, any of the other terms without the word "malaise" would also be acceptable, though we can probably all agree that "PEE" or "ARSE" are unfortunate acronyms that might well be avoided. (Though, on their behalf, they are memorable!) If it is felt important to emphasize that increased effort over a certain "boundary" can lead to a worsening of symptoms, and that this is a hallmark of this illness, then it would make sense to stick with terminology that reflects this phenomenon. Take care, J.
  13. jewel

    jewel Senior Member

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    I just re-read my post, and I doubt I'm making sense, but don't have the energy revise. I suppose the lesson for me is to re-read BEFORE posting. Oh, well, please forgive. Last sentence: If what is now called PEM plays a large part in defining this illness and in differentiating it from others, then it makes sense to choose words that reflect worsening after exertion... I think this is clearer.(?) J.
  14. Mithriel

    Mithriel Senior Member

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    I think you are right Jewel.

    It is the worsening with exercise, effort or activity that is defining. Other things may make some of us worse but they are not so universal so they come down the list so to speak.

    I never say relapse which I feel implies a remission. I prefer to use the term flare up which can include "I felt rubbish, now I feel like death".

    We have to fight the interpretation of the psyches that our saying we feel worse with exercise is just like what you get when you do something energetic when you are deconditioned.

    I was disappointed in the definitions of morbidity.
    I thought it meant the total sickness burden on the body but it is another word to steer away from.

    Mithriel
  15. Greggory Blundell

    Greggory Blundell *****

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    Not so sure what we feel when we cross that threshold is "merely" bad physical sensations; I think, at least within our community, it is widely accepted we may actually be harming ourselves in very real ways. Accordingly, Post Exertional Trauma?
  16. jspotila

    jspotila Senior Member

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    Sounds too much like PTSD?

    Mithriel suggested flare up, so PAF - post-activity flare-up?
  17. KnightofZERO

    KnightofZERO

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    Personally always thought it should be called "Post-Exertional Collapse" due to the patient's severe worsening post exertion.
  18. jace

    jace Off the fence

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    Knight, there I was thinking my idea had not yet occurred to anyone else, and at the very last post there you were
    Post Exertional Collapse, AKA
    Post Activity Collapse

    PEC PAC PEC PAC PEC PAC

    I know if I overdo it beyond my meagre limits, I collapse - for a few days, maybe

    or to keep to the original acronym, Post Exertional Meltdown

    I do love word games (ducks for cover)
  19. L'engle

    L'engle moderate ME

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    We describe our post exertional crashes in a lot of creative ways...

    Muscle wilting meltdown, air gulping short of oxygen feeling, brain blood vessels flayed on a laundry line in the wind, metal rods in the back of head (my personal punishment if I push through brain fog), someone crushing your ribcage, limbs giving out, mesh bag constricting head, 'pingers': those first small headaches that that warn of bigger headaches, 'back of head clamp' which is my specific exercising through OI headache, increased gravity feeling, being pushed backward into bed, temple-to-temple headache, weak arms as if bound down by stretchy ropes, eyes and brain blanking with a kind of pulse through the head... at any rate, I agree that our sensations are far too severe, varied and specific to be categorized as 'malaise'. I like post exertional collapse, it is very accurate. Harm and damage often come from these collapses, though on the outside they may look like 'malaise'.
  20. Jessrose21

    Jessrose21

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    Ooo, your descriptions are wonderful! And so accurate. I get those pingers, too, and if I don't heed them, I'm in big trouble!

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