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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. Mithriel

    Mithriel Senior Member

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    Good find, but I am not sure about that one because it might be used against us (isn't everything). Many of us don't have any symptoms until we do something that takes us over our personal limit so a doctor could ask if patients can go swimming, say and decide there is no PEM because they can. I think what I mean is that our limits are so variable a doctor might think we haven't got it because in other diseases which get worse with exercise it is always the same.

    I'm trying to say something in my head so bear with me :Retro smile:

    Take heart disease, the heart can only send so much blood round the body so there is a lack and you can't exercise. But it is actually at the point of producing energy we have the problem. It is like HIV, other diseases can cause problems with the immune system, but it is the immune system that is wrong in AIDS. And since it is these energy producing systems that bring about recovery we have an abnormally long recovery time. In fact we often go on getting worse for days.

    So we have a problem with exertion that is totally out of proportion. If we talk about our symptom as being the same as you get with heart disease the doctor will look at us and think his patients with heart disease can do much more and he can see the damage to their bodies so we must be exaggerating. They also recover much quicker so we must be revelling in it.

    None of this would matter if doctors had a proper concept of ME. Ramsay spoke of it as a disease where exercise made it worse and if his ideas had been taught to doctors and the psyches hadn't hijacked it, it wouldn't matter what the symptom was called as everyone would interpret it correctly.

    Mithriel
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Andrew- Nice find!

    I think an already accepted term used in other diseases would be ideal, so Activity Intolerance looks really good to me.

    Does anyone have any input on Mithriel's point that PEM is different from Activity Intolerance?
  3. IamME

    IamME Too sick for an identity

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    I *think* Mithriel is saying that the problem in ME is the lack of recovery through the energy process rather than something fixed and measurable in other diseases. I think it can be both though, and depending on the type of heart disease for ex., that can fluctuate too. ANd if pwME manage to stay within their limits, there's a sort of general consistency (otherwise you wouldn't be able to say whether you were mild, moderate, severe etc). I'm unclear on what alternative can be offered though other than re-phrasing it. The "post" of post-exertional is presumably cater for people who have no symptoms unless exceeding their limit and then with a delay, in which case surely that's what you would want to be recognised?

    The functional limitations can be measured anyway, such as low ejection fraction, VO2 Max, etc. I don;t think that they might fluctuate is as important once the exert-->relapse-->delayed recovery-->exert... exertional pattern is recognised. That is the real kiler, the real fundamental block people have in accepting the nature of the disability, because, incredibly, they just do not know (or have the psychs telling them we're an untrustworthy bunch who talk rubbish) and so are suspicious and constantly trying to "catch us out" for exaggerating if not malingering. It's become almost hard-wired into descriptions and garbage definitions that we don't have any signs, that "muscle weakness doesn't occur", deftly ignoring the elephant in the room, hidden by a smokescreen of "fatigue", oblivious to what we;ve been saying all along, that the effects take place over time.

    I've forgotten where my thread is going... I think "intolerance" is a bit too vague and not very convincing. Doctors tend to be sceptical on food intolerance compared with food allergy for example. Intolerance is often used with reference to deconditioning, as in "building up tolerance". So although it's ok to use an informal shorthand, for a definition I'd rather something mentioning the effect of exertion/activity/action, that might be delayed, and have a slow recovery. Maybe the slow recovery itself -- but the mention of recovery could be misleading.

    I've discovered kinesigenic:

    http://medical-dictionary.thefreedictionary.com/kinesigenic

    Maybe we can throw that "kinesiophobia" back in their fatuous faces? :Retro wink:

    Kinesigenic prostration? Kinesigenic paresis?
  4. Sing

    Sing Senior Member

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    Having just read this whole thread--Phew!--my choice is Exertion Intolerance. I always try to describe what I mean by this, quickly and efficiently, so that hearers can get the picture. I say I have very limited energy for anything involving speed, intensity or noise. I give a few examples of mental or physical forms of exertion and their consequences for me--i.e., lying on the sofa for two days afterwards, wiped out. I give them a few examples of the activities I have given up in order to avoid these consequences, and name some of the most important, meaningful and fun things I can physically no longer afford to do. That is when I see them start to get it!

    Sing
  5. IamME

    IamME Too sick for an identity

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    Sorry I missed Gemini's quote. I think for the reasons I said intolerance isn't strong enough, thinking about it I'd rather use deterioration. As Mithriel says the effects can continue to get worse even for a while after the stimulus is removed (which research backs up). Deterioration also can cover the long term, which might be helpful as one of the things the 'babblers say is that even if you get a little worse in the short term it should be worth it in the long term. And small overexertions over a long period can also lead to a decline.
  6. IamME

    IamME Too sick for an identity

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    That's good Sing but I thought this was with respect to a definition or professional description, not just "what to tell people", maybe I misunderstood.

    But if it's to tell anyone, I find a battery analogy quite good. Healthy people are on mains power, some illnesses are on car batteries. Ours is on an AAAA penlight cell that's faulty, lasts about 30 seconds and takes at least two days re-charge. And tends to leak. You can maybe squeeze more out if it by letting it charge longer but that becomes impractical.

    On top of that you have not just exercise but, problems with any stimuli, problems with being upright, susceptibility to infections, sudden periods of profound malaise and sleepiness that come out of nowhere, possibly many types of pain, intolerances, allergies and ill effects of eating, and so on.
  7. jewel

    jewel Senior Member

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    I use the battery analogy too. People still don't get it, but they maybe understand a little bit more. Concur that it is not a medical term-- Extensive recharge required after exertion (ERRE).
  8. xchocoholic

    xchocoholic Senior Member

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    Me again ... I vote for ATP deficiency or Kreb's cycle malfunction (malfunction may not the right medical term ?) because most docs relate to medical terminology better than generalized terms. And this really says what's going on here. No need to add to the vagueness surrounding ME/CFS/FM that we already have.

    My understanding is that if exertion causes anything other than "malaise" then your body is actually trying to deal with toxins (candida, bad bacteria, oxalates, etc) stuck in your cells and you've just stirred them up by exerting yourself. Just like if you hadn't excercised or gotten out of bed in a while ... your body has built up toxins that it needs to eliminate.

    And that ATP is what's lacking when you have no get up and go left in you ..
  9. Andrew

    Andrew Senior Member

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    I like it -- the one without the word "physical." I've been making my own short list, and this one is going on it.

    There is another terms of "exercise intolerance" that I've seen used with CFS/ME. The limitation is being tied only to exercise. Although, it is a good term for us to use with doctors who are ignorant about CFS and exercise.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I would substitute 'dysfunction' for 'malfunction.' I think those are good terms for that 'pathology'.

    This underlying disease mechanism causing PEM, but it is only one of several- although probably the most important and least recognized. It also isn't PEM, it's a cause of PEM so I don't think it can strickly substitute for the term PEM.

    Definitely agree. (Also, to some degreee, low cortisol, inflammation, lack of oxygen, anemia, ANS, cardiac probs., nitric oxide etc. etc. all probably contribute to PEM.)

    Battery's a good picture. I used to use the example of a rock, or more morbidly, a corpse as I felt my body was closer to death than normal life.

    My Dad would say: "everyone's tired all the time. Just drink more coffee and pick yourself up and go to work." and I'd say: "I'm like a rock or corpse; actually worse 'cause a rock or corpse can't feel extremely sick and be in intense constant pain. Giving me coffee is like pouring coffee into a corpse or on a rock and expecting it to then work a 9-5 job."
  11. Woody

    Woody

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    Misconceptions

    As a H.S. coach for many years, the term Exertion Intolerance, brings to mind the athlete that needs a gut check. The type that is always with the trainer/physical theripist, and is late to practice. I can only imagine the other athletes reactions to a doctors note stating Exertion Intolerance, and he needs to miss the next practice, game, or season.

    While I think Exertion Intolerance is a very descriptive phrase, it doesn't create a crystal clear image of a malady, or abnormality for those that read only the "headlines". I feel the term needs words like: Disorder, Defect, Anomoly, Abnormality, ... to avoid misconceptions which is our biggest problem!

    Also, I want to apologize for my word finding/meaning cognitive difficulties when I posted the term: :Retro redface: Discrepant exertion amplification disorder , as DEAD as a diversion. Meaning in my mind dead tired, dead to the world, not as in morbidity/mortality:eek:... yet that phrase created enough misunderstanding that I got an PM asking if I was OK! I appreciated the response and concern, and didn't even realize until after i had written the response, that it was this term/acronym was the root cause of the PM, not another post. We all need clarity!
  12. ixchelkali

    ixchelkali Senior Member

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    Of the suggestions so far, Post-Exertional Collapse is the closest description of what I experience. I had been thinking of Post-Exertional Prostration, but that gives up PEP as an acronym, which is just what we DONT have. :rolleyes: Although its not as problematic as Mithriels Activity Related Symptom Exacerbation. ;)

    But personally, my post-exertional reaction is a flu-like feeling, a feeling of being sick, along with feeling feverish, chills, achy, nausea, weakness, etc. In looking for the medical term for a flu-like feeling, it seems that most often they call it a flu-like feeling. They also call it influenza-like illness, or ILI.

    Maybe the reason its hard to know what to call it is that there isnt a term for it. Its really the distinguishing characteristic of this disease, so maybe borrowing terms from other illnesses doesnt work. Maybe when we finally understand the mechanics of how this disease operates, well know better what to call it (like maybe mitochondrial dysfunction, or something).

    In the meantime, I guess Ill just stick with saying that if I do too much I have flu-like symptoms. It doesnt sound medical, but it is descriptive.
  13. Sing

    Sing Senior Member

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    Yes, you are right, IamME; this thread is about what we want to see as a professional description. But I think it is helpful for us to go back and forth between naming a possible term and clarifying what we mean by it, descriptively, for our own understanding. I think your analogy with different power sources--the main vs. a small battery--is terrific! I hadn't heard that before.

    I also feel Woody is making a very good point here, which I also hadn't thought of:

    "While I think Exertion Intolerance is a very descriptive phrase, it doesn't create a crystal clear image of a malady, or abnormality for those that read only the "headlines". I feel the term needs words like: Disorder, Defect, Anomoly, Abnormality, ... to avoid misconceptions which is our biggest problem! "

    Teamwork is our strength!

    Sing
  14. Greggory Blundell

    Greggory Blundell *****

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    NextPlay

    I get this thread concerns PEM demeaning us as a community. It is also problematic in that, like CFS, it reinforces the misconception that we are not really ill. It perpetuates an impression, not just among the general population, not just medicals, but within the judicial theater as well - where many of our SS benefits hang in the balance as a judge mulls over just how serious a symptom qualified as "malaise" can be.

    It would be a fine thing if we could reach a concenus for a new and appropriate phrase/acronym and promote it to...I dunno, who ever the right group might be. I know there are individuals in this learned community who would know.
  15. Mithriel

    Mithriel Senior Member

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    Ixchelkali said

    It is the fact that we find it so hard to describe that makes me think what we have is unique to ME/CFS. We can see why the descriptions in other diseases don't exactly describe us and someone who has never experienced it will not get a good sense of what we feel from them.

    The cardinal symptom of ME is an abnormal response to exercise. It is the core of our illness, not a consequence of poor blood flow the way it is in heart disease or lack of muscle fibres in muscular dystrophy. So every aspect of our illness can become worse with exertion, as it is the exertion that causes the problems in the first place.

    There is often a global symptom exacerbation and we get problems that are not associated wiht the point of exertion. My first sign I have walked too far has always been double vision. It is not common for other people to say "I walked miles today, now I can't read!"

    This thread is good as maybe we can reach some sort of concensus or at least understand the problem better.

    Mithriel
  16. fds66

    fds66 Senior Member

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    I agree Mithriel - it doesn't matter if the exertion is physical or mental or emotional - it makes me flare up globally. People find it hard to understand that if I walk any distance I just can't think straight. It isn't the experience of most people. In their experience if you walk too far your legs get tired but it doesn't make you forget everything, not be able to remember words, make your glands swell up, make you feel really sick, get headaches, not be able to sleep at night and umpteen more things totally unconnected with your legs.
  17. Andrew

    Andrew Senior Member

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    In my experience it's symptom flare. And in some ways it is similar to other illnesses. For example, let's say you have a very bad case of the flu. If you stayed in bed your symptoms would be a lot less than if you got up, went shopping, and came home.
  18. Frickly

    Frickly Senior Member

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    I have started referring to my crashes by saying, "I am having an energy crisis"

    After all, this is due to our bodies inability to create the energy it needs to function (low glutathione).

    Crisis meaning-"turning point in disease: a point in the course of a disease when the patient suddenly begins to get worse or better"

    "Crisis has four defining characteristics. Seeger, Sellnow and Ulmer[1] explain that crises are "specific, unexpected, and non-routine events or series of events that [create] high levels of uncertainty and threat or perceived threat to an organization's high priority goals." Thus the first three characteristics are that the event is 1. unexpected (i.e., a surprise), 2. creates uncertainty, and 3. is seen as a threat to important goals. Venette[2] argues that "crisis is a process of transformation where the old system can no longer be maintained." Therefore the fourth defining quality is the need for change. If change is not needed, the event could more accurately be described as a failure."

    I guess, for those that no longer crash and are bedbound, we could call this "Energy failure".
  19. Sing

    Sing Senior Member

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    Disautonomia?

    DISAUTONOMIA is a great word, I feel. I wonder if it would be suitable here, as one part of a term to replace PEM, or if PEM might be considered an exacerbation of disautonomic symptoms?

    After listening to Dr. Charles Lapp's recent talk in which he used Disautonomia to cover the whole host of autonomic actions which our systems can have trouble with, including breathing, swallowing, blood pressure, heart rate, vision, defecation (constipation or diarrhea), nausea and vomiting (from gastroparesis), sweating/never sweating, temperature control, on and on....

    and how all this increases whenever we exceed our capacities for exertion, physically or mentally,

    I wonder if we could work it in here, or it perhaps it ought to be clear at the top, part of a new term altogether for ME/CFS?

    Sing
  20. Tammie

    Tammie Senior Member

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    sing, disautonomia is actually part of the canadian consensus diagnostic criteria......many of us do have problems with this, but it is not the same thign as PEM (it may be worsened along with other things when experiencing PEM, but it is definitely a different thing)

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