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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. Sing

    Sing Senior Member

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    Thanks, Tammie, my brain wasn't working well. I have both disautonomic symptoms and PEM today as well as hovering on the verge of strep throat. But it is fun to communicate here. Thanks for clarifying!
  2. jspotila

    jspotila Senior Member

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    Thank you, Andrew and others

    An article about PEM appeared in today's CFIDS Link from the CFIDS Association. I would like to thank Andrew for his assistance with the article, along with several other forum members who chose to remain anonymous. This is the first in a series about PEM. The next one will look at the state of research. If you are interested in assisting or providing material, please feel free to PM me.

    http://www.cfids.org/cfidslink/2010/060204.asp
  3. dancer

    dancer Senior Member

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    The article on PEM was my favorite part of the CFIDS Link. Good info and description. Great job Jennie and all!
  4. Kati

    Kati Patient in training

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    Earlier posts were suggesting intolerance as in post extertional intolerance. My doctor rolled her eyes when I talked about orthostatic intolerance. It has some slight suggestion that the person is reluctant to do the action, in my opinion.

    As for the CAA article from Jenny, personally I can predict somewhat what will cause post exertional RELAPSE, for instance extra activities that require more energy than my energy bank can supply: going out for more than an hour will do it. Grounded. Receiving my sister and her kids for the week end. Grounded. Attending my niece's gymnastics competition. Grounded. Travelling to town to see a specialist. Grounded. Walking more than 2 blocks. Grounded.
  5. jspotila

    jspotila Senior Member

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    I like the term "grounded." It makes me think of grounded airplanes, unable to fly. And it also has a punitive element to it, like being grounded as a kid. Good description, Kati!
  6. alex3619

    alex3619 Senior Member

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    Hi

    How about DER - delayed exertional relapse? Or PER, with prolonged instead of delayed? Personally I like DER, because of it can be interpreted a little like doh! which adds a touch of humour. Post exertional implies after exercise, and exercise intolerance implies during exercise, but the problem with PEM is the symptoms can take one or more days to fully manifest and can last days or longer. Has anyone though about something like Prolonged Exertional Symptom Exacerbation, PESE?

    Some muscle related problems connected to PEM can last decades - some of the muscle pain I had from repeated muscle use took fifteen years to calm down to the point I wasn't in constant pain.

    Bye
    Alex
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Jennie, very nice piece on PEM! Esp. liked the inclusion of quotes from doctors with ME.
  8. Jackofit

    Jackofit

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    Post Exertional Morbidity makes medical sense

    Its easy to overthink things and ignore the obvious just because it isn't exact, but nothing ever is. The primary medical definition of morbid is diseased, and co-morbid means additional diagnoses, so Post Exertional Morbidity would pass as the best medical term to describe the worsening of "the disease" after any exertion mental or physical. Its a simple change too, unlike the problem we have with CFS.

    What a pity the CAA didn't do something about the insulting CFS when it had the chance, anyone who doesn't know about this should read The Real History of the Name Change Movement by Tom Hennesssy at his RESCIND website and know that right from the beginning the CAA was with the CDC denying the truth about the M.E. epidemics and WHO classification and letting CFS destroy us, and you only have to look at where 25 years of CFS was heading which was CDC planning to copy the UK CBT/GET clinics, before WPI found XMRV.

    Justin, great signature and absolutely justified under the circumstances, last thing I read was CAA having a go at WPI, its the CAA thats playing a weak hand! Stick with that signature mate, they need to be reminded until they get the message (will they ever change?) that they are there to serve the patients first and maybe they should donate half their salaries to WPI for a start!
  9. Niceguy

    Niceguy Guest

    How about PEFLATROY
    Post Exertional Feeling like a Truck Ran Over You
    I' m sorry I can't come in to work today
    I have PEFLATROY
  10. Andrew

    Andrew Senior Member

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    The urge came over me to post ones I've jotted down as we have discussed this.

    post exertion symptom exacerbation
    post activity symptom exacerbation
    post activity exacerbation
    exertion induced symptom exacerbation
    exertion induced exacerbation

    BTW, I like the PEM article.
  11. jace

    jace Off the fence

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    Post Exertion Meltdown
    Post Exertion Collapse.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Perfect!

    _______________
  13. dean

    dean

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    Exhaustion = extreme fatigue

    Persistent = doesnt go away

    Periodic = can be cyclical

    Idiopathic = cause is unknown

    Persistent Periodic Idiopathic Exhaustion.......
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The use of persistent and periodic at once could cause confusion imo.

    Also not a big fan of idiopathic- it just lengthens the term without adding much info imo. Also evokes idiopathic chronic fatigue.
  15. Victoria

    Victoria Senior Member

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    post execution...... that really cracks me up...

    I like the word "collapse"

    It speaks of an abruptness or significant ending (as opposed to fading or non-event).
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, studies show that post-execution, many people fail to exercise leading to deconditioning and malaise.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Anything but "Malaise"!

    Hey everybody!

    There have been so many good suggestions here. I strongly urge you to just start using whatever term you like instead of 'malaise'! Disease exacerbation, morbidity, meltdown or whatever you like. CDC does not own the language and can not force you to use an inappropriate and medically incorrect term like 'malaise'.

    Each time you refuse to use the term "malaise" and use another term this brings closer the day when the terminology will change and we will get treated like human beings.

    If we refuse to use 'malaise' then slowly other patients won't use it. Then a few 'radical' doctors won't use it, then more and more and CDC and Wessely will be the only ones using it and this will show how obstructionist and anti-science they are. This will take a long time, but it will never happen if we don't start. So let's start now.

    Terms or 'memes' spread like viruses. The more a term is used, the more it spreads and spreads and becomes entrenched. The only way to stop it is for us to stop using the term and substitute another that will catch on.

    I like 'Morbidity' because it fits into PEM, sounds medical and thus it will cause the transition to be made much quicker, imo. It will be much easier to convince influential doctors to change to Morbidity than to another term and influential doctors adopting the terminology is the only way to get it into medically accepted use.

    The fact that it sounds medical and doesn't have psychological connotations will also help to influence people to rightly think of our disease as medical instead of psychiatric.

    Similarly, Jason has shown that the inappropriate term 'chronic fatigue syndrome' causes significant social and medical harm to patients. Please use a different term- whichever one you like! (As you may know I like ME/CFIDS). If noone but CDC and Wessely are using "CFS" they will have to stop calling it "CFS" or be exposed as fools.

    If you do ever use the terms "CFS" or "malaise", please bracket them in quotes. This takes little effort and will go a long way toward establishing these terms as suspect and inappropriate. Imagine what the effect of the tiny step of just adding quotes to these terms would have if most patients did it. The term "CFS" would acquire an aura of being bogus.

    Little actions of standing up for ourselves can have outsized effects. AIDS patients kept standing up for themselves and now they have $3B a year from NIH (of course the fact that AIDS was obviously fatal made this 'easier' for them to achieve) and their disease is largely manageable.

    Rosa Parks did a little thing of refusing to go to the back of the bus. If she had a friend there, her friend probably said "what are you doing? it's easier just to go to the back of the bus, they might attack us and anyway refusing to go to the back of the bus is never in a million years going to do anything for blacks; we'll always be discriminated against. It's not worth trying." But Rosa Parks knew that putting her foot down and saying "No, I will not be treated like a second-class citizen!" would help everyone- black, white, our whole nation.

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