• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The term "Post Exertion Malaise" is also insulting.

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
I might have found something. Instead of malaise, it could be "exacerbation." See below
. . . .

And in our cases, our disease or symptoms are exacerbated by exertion. So the correct term (and one used in medicine) is "exacerbation." Problem is, then PEM becomes PEE. And I'm not posting all this as a joke. I wish this had turned out better. I wonder if we can rework "post exertion" so we don't have PEE.

What about Post Exertion Symptom Exacerbation? That would make it PESE (maybe a little better than PEE).
 

Greggory Blundell

Senior Member
Messages
109
Location
New Jersey, USA
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...
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
What about Post Exertion Symptom Exacerbation? That would make it PESE (maybe a little better than PEE).
. Sounds good to me!

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...
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.
 

Greggory Blundell

Senior Member
Messages
109
Location
New Jersey, USA
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. :)
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
I'm not sure about "relapse."

relapse
verb |riˈlaps; ˈrēˌlaps| [ intrans. ]
(of someone suffering from a disease) suffer deterioration after a period of improvement.

noun |ˈrēˌlaps|
a deterioration in someone's state of health after a temporary improvement

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 . . .
 

Greggory Blundell

Senior Member
Messages
109
Location
New Jersey, USA
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.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
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.

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

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
What about Post Exertion Symptom Exacerbation? That would make it PESE (maybe a little better than PEE).

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. ;)
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
We definitely don't want PEE! What about PER - post-exertional relapse?
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.
 

jspotila

Senior Member
Messages
1,099
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!

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)
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
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)

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

The Phantom

Member
Messages
70
Location
near Philadelphia
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:
burnout, collapse, consumption, debilitation, debility, enervation, expenditure, fatigue, feebleness, lassitude, prostration, weariness
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.
 

Greggory Blundell

Senior Member
Messages
109
Location
New Jersey, USA
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. :)
 

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US
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
 

Greggory Blundell

Senior Member
Messages
109
Location
New Jersey, USA
"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.
 

Greggory Blundell

Senior Member
Messages
109
Location
New Jersey, USA
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.
 

Greggory Blundell

Senior Member
Messages
109
Location
New Jersey, USA
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...
 

CBS

Senior Member
Messages
1,522
Maybe we should switch to WTMUS (worse than my usual sh*tty). :innocent1: (hope the profanity did not offend)

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!
 
Back