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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. jspotila

    jspotila Senior Member

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    I love these descriptions. I add my own - feeling like I am a shaken up can of soda, with scattershot tingles and pain over every inch of my body. Not a very good acronym though.
     
  2. Greggory Blundell

    Greggory Blundell *****

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    But resounds nevertheless, with truth and ... how do you say this? Experience? Somehow that word falls short...
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Post Exertional Morbidity

    I hope Gerwyn wasn't joking, because Post Exertional Morbidity is what I use (I think i coined it) and I don't intend it to be a joke. Morbidity doesn't mean mortality (death); it's a medical term whose primary meaning is disease or illness.

    PEH is alright; my only thing is it sounds like neurasthenia with which we don't want an association.

    I don't like adynamia so much since, if i didn't know what it meant i would think it means 'not dynamic' as in the patient's personality isn't dynamic so he doesn't get much done.


    I don't like this because it specifies symptom which has a bad rap in medicine because to a doctor a symptom is something the patient reports that the doctor can't verify and a sign is something the doctor can see, measure or verify himself. Using symptom also could be used to imply that only the symptoms, but not the underlying disease worsens.

    Gracenote,

    I agree with both points. I like Exertion Induced Exacerbation; I would suggest a variant Exertion Induced Disease Exacerbation or EIDE. (I also like Post Exertional Disease Exacerbation but PEDE sounds like peed).

    Post Exertional Exacerbation is really good, but i don't like PEE. :Retro smile:

    Overall, I like Post Exertional Morbidity because it fits in PEM, it sounds medical to both lay people and doctors and it rolls off the tongue more easily than some others.

    Exertion Induced Morbidity could be good, but doesn't fit into PEM.

    I also think Post Exertional Crash is good, though it's not medical sounding.

    I think it was Stuart on another thread who made the excellent point that these crashes are not caused only by exertion, but by any stress, challenge or insult, eg. an infection, physical or mental effort, physical injury, strong emotional stress, chemical exposure etc.

    He suggested Post Event Morbidity, but I don't think 'event' or any other fitting word (stress, stressor, insult, challenge) i can think of would be good since they all could be co-opted by psychiatrists to imply psychological involvement. Anyone have any ideas on this?
     
  4. Tammie

    Tammie Senior Member

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    I like "amplification" because activity/exertion/whatever really does amplify all the symptoms, but I agree that the word symptom itself could be a problem

    activity induced disease amplification, post activity illness amplification?

    I also like "collapse" - it describes what happens pretty well; however, I don't like it quite as much bc it seems to imply just the exhaustion, weakness, etc gets worse, and in reality it is all the symptoms that are increased

    personally, I think "annihilation" also fits, but I don't see anyone believing that it is that bad, and it's not exactly medical sounding either
     
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    i don't think 'illness' is as good as disease since the psychs want to call ME an illness because illness is what the patient says he has and disease is what a doctor diagnoses you with, with again their assumption or implication that doctors are more objective and correct than patients.

    The psychs claim we internally 'amplify' our symptoms- which doesn't make sense, but this is another way they try to imply that we're exaggerating or that it's all in our heads. Thus I'm not as big a fan of 'amplification'.
     
  6. Woody

    Woody

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    How about something simple so both lay and professional people know that we do not react to exercise in a normal way, and it makes us sick? Maybe something like:

    post exertional disorder

    post exertional anomaly

    post exertional abnormality
     
  7. Andrew

    Andrew Senior Member

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    What about exertion induced exacerbation? Or activity induced exacerbation?

    Also, I'm warming up more to jspotila's "post-activity exacerbation." It's easier to say than most, and actually comes very close to post exertion exacerbation.

    The word "morbidity" means "illness" and it doesn't carry the idea that the illness got worse.

    OTOH, we could use post exertion exacerbation and not worry that it's PEE. But right now I'm favoring "post activity exacerbation."
     
  8. xchocoholic

    xchocoholic Senior Member

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    I copied this into my original post where I referred to Dr. Myhill's explanation too ...

    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 when I'm suffering from PEM ... KOW ...

    IMHO, we should try to keep this symptom seperate from all the others. And while I'm at it ... :rolleyes: I'd like to see anyone diagnosed with ME/CFS tested for this either via Dr. Myhill's test or the Pacific Lab test. Except that the Pacific Lab testing needs to be done for more than just the first day after exertion. Sometimes I can go for a few days before crashing ...

    http://drmyhill.co.uk/wiki/CFS_-_The...ndrial_Failure

    PS. Thank you Dr. Myhill ...
     
  9. JT1024

    JT1024 Senior Member

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  10. JT1024

    JT1024 Senior Member

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    Great thoughts on renaming PEM..... Also, great post xchocoholic!

    There is so much information out there, it makes me angry that doctors still ignore EVIDENCE.
     
  11. Dr. Yes

    Dr. Yes Shame on You

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    Another one for the thesaurus: Post- Exertional (or whatever) Intensification.

    But to improve doctor-patient understanding, I suggest we call it "What", because that's what doctors say when we give them any of these ME/CFS terms.

    "Doctor, I have 'What'"

    "What?"

    Exactly.

    (By the way, 'ME/CFS' comes under the "What" umbrella, too.)
     
  12. shiso

    shiso Senior Member

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    Just came across this thread, and I think "MWTMUS" and "What?" get the most points for descriptive accuracy and reality, respectively. :rolleyes:

    Seriously though, "malaise" bothers me too. All healthy people get it, just like they get "fatigue" and the blues. Healthy people with "malaise" and "fatigue" benefit from exercise, while the core problem of the disease is that function worsens with increased activity.

    Why do we need to be tied down to a catchy acronym, in the first place? How about just "decrease in physical and/or cognitive function upon exertion" or "exacerbation of physical and/or cognitive symptoms upon exertion"?
     
  13. fds66

    fds66 Senior Member

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    Perhaps turning it round might give some better acronyms

    Abnormal response to exertion
    Delayed recovery from exertion
    Symptom exacerbation due to exertion
    Exacerbation due to Exertion
    Exertion induced Exacerbation
    Exertion induced Symptom Exacerbation

    (not sure if they work because recovery implies that we actually recover from exertion ? I certainly never feel well so anything that implies I'm OK til I exercise is no good)


    If you stick with the Post Exertional then you could use worsening but it's a bit vague - PEW
    (reminds me of a children's program here with firemen called Pew Pew Barney Mcgrew lol)

    Personally I just think of it as Consequences (or Dire Consequences if it's really bad)
    or Overdraught at the Energy Bank
    or Perhaps I Shouldn't Have Done That
     
  14. girlinthesnow

    girlinthesnow Senior Member

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    Post Exertion Malaise is clearly a bad description of what happens

    Abrnormal Response to Exertion is neutral and clear. (ARE)

    Exertion induced Symptom Exacerbation says what happens, ie. the abnormal bit. (ESE)

    I like ESE
     
  15. Knackered

    Knackered Guest

    I think you've hit the nail on the head with that one, I like it too.
     
  16. Carrigon

    Carrigon Senior Member

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    I had a fight with my last doctor about the whole "waste basket" thing. I just wanted to punch him. He kept insisting that CFIDS is nothing more than a "waste basket disease". I've just had it with that term. Maybe we should all wear a tee shirt with a trash can on it? UGH. And the word malaise is so inadequate. I overdid it this weekend and I am beyond malaise. I'm post exertionally dead. I'm really having trouble moving around at all, as in, can't get off the bed or couch. People just don't understand, when the energy is gone from the cells, you can't get it back. And you're lucky when you do get alittle of it back after alot of rest. Something is just draining us dry. But it's the ultimate invisible demon, no one can see it happening.
     
  17. Angela Kennedy

    Angela Kennedy *****

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    Abnormal response to exertion so far seems good. 'Symptoms' - bearing in mind the way certain docs often use this term to denote subjective 'feelings' rather than physiological processes, can be used to trivialise this condition.
     
  18. Andrew

    Andrew Senior Member

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    I happened to see my ENT doctor today. I see him for cancer follow-up, not CFS. I told him I was interested in his feedback on medical terms. I asked him what the medical term is for an illness getting worse, other than the word "exacerbation." He says "exacerbation" or "exacerbated" is what he uses, and he doesn't know of another. I also asked him what it means to him about the word "symptom" in this context. I asked if using the word "symptom" could imply that the condition has not really gotten worse, and that only the symptoms are worse. He said that that if someone says the symptoms are worse he doesn't take it any way other than the illness getting worse. IOW, according to one doctor I asked, it would be okay for us to use the word "symptom."

    But because there has been some question about how doctors might take the word "symptom," why not ask the next doctor you talk.
     
  19. Gemini

    Gemini Senior Member

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    Andrew,

    Great topic. My choice:


    Exertion Intolerance EI (or Physical Exertion Intolerance-- PEI)

    exacerbated by normal and above levels of physical and/or cognitive activity; significantly worsened following prolonged and/or strenuous activity; acquired (did not exist pre-illness); may be related to decreased metabolic energy production and imbalance between oxygen supply and demand; evidenced by overwhelming lack of energy, inability to maintain usual routines, decreased performance, impaired ability to concentrate, pain, and possible abnormal heart rate and dyspnea with activity.


    Adapted from Activity Intolerance, Tabors Cyclopedic Medical Dictionary, 16th Ed. used in the diagnosis of diseases such as viral hepatitis, myocarditis, rheumatic fever, TB, anemia, and others. Each disease customizes the description to match its symptoms.

    Formal definition of Activity Intolerance is a state in which an individual has insufficient physiological or psychological energy to endure or complete required or desired daily activities.

    I changed it to Exertion Intolerance to keep the focus on the physical and customized it to ME/CFS symptoms.

    Gemini
     
  20. Woody

    Woody

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    I really like the word disorder. It makes it clear to everyone, doctor, patient, and public that something is wrong. It can't get turned around and used against us. With that in mind, how about:

    Discrepant exertion amplification disorder, or DEAD :D

    *Meaning dead tired, dead to the world...
     

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