Post-Exertional Symptom Exacerbation (PESE)

[hapl808]

I am really feeling kind of snarky about this, so you might want to discount my opinion.

Hmmm. If that's the threshold, then people should probably discount all my opinions.

I guess I think there is stigma against chronic illness full stop. At some level we need to fight that stigma more directly, rather than getting stuck on the name. It's distractor from the fear and distain for sick people. I also think that this disdain is faced by people with all chronic illnesses. All (whatever the diagnosis) of us are pegged as lazy, malingering, not wanting to do the work to get healthy (with the underlying false assumption that hard work is the case of health).

This is the fundamental problem, but I really have no idea how to address it.

The moment you start talking about chronic illness, you're immediately discounted and recategorized into 'crazy' or new age or dumb or whatever. Even if you're a licensed MD, the second you say you have Long Covid, your colleagues are going to view you differently. I know people who have experienced this.

I didn't mind when the Simpsons made fun of everyone: South Asian Indians, Jews, alcoholics, police, lawyers, etc. I wonder if all those have become un-PC, but maybe it's still okay to make fun of the chronically ill (something they did in this 1991 episode). Hopefully not, but maybe I'm not up on my Simpsons.

 

[hapl808]

And to be clear, I think everything should be allowed or none of it should be allowed. Otherwise it's a (poor) judgment call. If you make fun of all groups, I'll take the chronic illness jokes. But if some groups are considered marginalized, then I think we're one of the most marginalized group because even our group status is a (bad) joke.

 

[Long Haul Mono]

...Some say that the use of the word "malaise" in PEM minimizes the seriousness of PEM...

...just like "Chronic Fatigue Syndrome" minimises the seriousness of Myalgic Encephalomyelitis!

 

[Revel]

. . . and whatever happened with "Systemic Exertion Intolerance Disease" (IOM, 2015)?

So many names, such little progress . . .

 

[Blue Jay]

Phew! I've read through all the replies and now I'm suffering from PEM or PESE or PESM or summat. Whatever we call it, the effect is the same.

 

[Rufous McKinney]

and whatever happened with "Systemic Exertion Intolerance Disease" (IOM, 2015)?

thats my diagnosis! I think I"m the only one!

 

[Rufous McKinney]

I've read through all the replies and now I'm suffering from PEM or PESE or PESM or summat. Whatever we call it, the effect is the same.

yesterday I mistakenly read nine pages of a 28 page legal brief. Phew...opps as I dont generally read any one thing for very long...

then, I watched a film in the afternoon and after became VERY exhausted. Slept 11 hours...

 

[RyeRyeBread]

I like PEM 🤷‍♂️😅 Has a better ring to it

 

[gm286]

Unless I’m unaware, I don’t think the Multiple Sclerosis “attacks” have a label of their own aside for them being perceived as “attacks.” This is the closest analogy to the ME/CFS “flare” in my mind (see below for MS wiki page excerpt).

Based on the below, and although the ME/CFS mechanism is crucial, why seek to label the flare if no one is proactively using that label to make better scientific sense of this chronic illness?

This conundrum reverts / redirects to the problem with the name “ME/CFS.”

At the click of a finger I would have certainly preferred that, at large, the label “Chronic Enervating Neuroimmune Disease” (penned by Maureen Hanson at the Cornell center of the same name) replaced the name of ME/CFS.

“(…) as episodes of sudden worsening that last a few days to months (called relapses, exacerbations, bouts, attacks, or flare-ups) followed by improvement (85% of cases) or as a gradual worsening over time without periods of recovery (10–15% of cases).[2] A combination of these two patterns may also occur[14] or people may start in a relapsing and remitting course that then becomes progressive later on.[2]”

 

[Rufous McKinney]

“Chronic Enervating Neuroimmune Disease” (penned by Maureen Hanson at the Cornell center of the same name) replaced the name of ME/CFS.

I like chronic neuroimmune, and yes its a disease...

somehow the word Enervate....well its an odd word, that could confuse many. (well, it confused me). (in biological terms it suggests you removed a nerve)

For instance, here, we've got indolence triggered...

"What is the synonym of enervate?


Some common synonyms of enervate are emasculate, unman, and unnerve. While all these words mean "to deprive of strength or vigor and the capacity for effective action," enervate suggests a gradual physical or moral weakening (as through luxury or indolence) until one is too feeble to make an effort."

 

[gm286]

I would have preferred “innervating” rather than “enervating” myself, but perhaps that is even weirder. I basically see this disease as something willing its way through the nerves, meaning using the nerves as the conduit of choice. The symptoms themselves rely on a nervous system “grammar,” I find.

In French, saying “tu m’énerves” basically means you’re annoying me. You’re “getting under my nerves,” literally. (Not you, Rufous).

 

[PhoenixDown]

I believe that patients who suffer LTSE - Long Term Symptom Exacerbation, should be given a new diagnosis especially if they experience permanent deterioration from exercise like me.

 

[Murph]

I just want to put this experience somewhere so a researcher can find it one day, or a future AI scraper can find it and build it into its symptom model.

I lose strength rapidly during PEM. I suspect my body may eat its own muscle during PEM.

I'm mild enough to be able to do various sets of exercises. I do situps, lift little dumbbells. I can usually make steady progress, even if I take a little bit of time off. But if I take time off for a PEM event, when I come back I'm noticeably weaker.

It is established that we use amino acids for fuel preferentially; the body can source these from its own muscles if it wants.
There is evidence of high levels of Serum 3-methylhistidine, a marker of muscle breakdown (aka catabolism) https://pubmed.ncbi.nlm.nih.gov/28018972/ in male patients.

I suspect that happens at a higher-than-usual rate during PEM. It would explain all the muscle wastage in severe patients who are regularly in PEM.

If I'm right, there are other questions.

• Is this a normal bodily process that is activated usefully in PEM to counteract the core thing that's going wrong?
• a normal bodily process that is activated unhelpfully, at the wrong time, or turned up higher than it would be?
• Is it an abnormal process that is annoying but not the problem.
• An abnormal process that is itself at the heart of our problems?

Any of these seem possible.

 

[Long Haul Mono]

It is established that we use amino acids for fuel preferentially; the body can source these from its own muscles if it wants.
There is evidence of high levels of Serum 3-methylhistidine, a marker of muscle breakdown (aka catabolism) https://pubmed.ncbi.nlm.nih.gov/28018972/ in male patients.

I'm glad you mentioned this, as I recently had a 24hr urine analysis return high creatinine levels. This research paper was also of interest. Scroll down to the title "Models of Sarcopenia".

Muscle produces creatinine and 3-methylhistidine, which are excreted in the urine...

...and likely leads to nocturia.

I suspect that happens at a higher-than-usual rate during PEM. It would explain all the muscle wastage in severe patients who are regularly in PEM.

Sarcopenia = muscle wastage.
This has got me concerned.

At the moment nocturia is trashing my sleep, ie having to get up 3 or more times for a toilet break.
Previous investigation has identified I have 'kidney concerns' but nothing like kidney failure. The specialist didn't have an answer why my kidneys were 'so busy' effectively hyper-filtering but not failing. I may have just got that answer.

The next question is, how do you eliminate or manage this creatinine/3 Methylhistdine dump?

 

[Blue Jay]

I'm glad you mentioned this, as I recently had a 24hr urine analysis return high creatinine levels. This research paper was also of interest. Scroll down to the title "Models of Sarcopenia".

...and likely leads to nocturia.

Sarcopenia = muscle wastage.
This has got me concerned.

At the moment nocturia is trashing my sleep, ie having to get up 3 or more times for a toilet break.
Previous investigation has identified I have 'kidney concerns' but nothing like kidney failure. The specialist didn't have an answer why my kidneys were 'so busy' effectively hyper-filtering but not failing. I may have just got that answer.

The next question is, how do you eliminate or manage this creatinine/3 Methylhistdine dump?

I'd be interested to know if you find an answer to this one, @Long Haul Mono. I have nights when I visit the toilet every half hour for the first half of the night. How I'd love to get an undisturbed night's sleep - as most of us would!

ME certainly throws up some challenges.

 

[Long Haul Mono]

I'd be interested to know if you find an answer to this one, @Long Haul Mono. I have nights when I visit the toilet every half hour for the first half of the night. How I'd love to get an undisturbed night's sleep - as most of us would!

ME certainly throws up some challenges.

"...some challenges"
Now there's an understatement, but at the risk of going out on a tangent I'll spare you the details.

If you're not already doing so, try side-sleeping, or better still, front-sleeping, if you're able to.
For me, the worst of the nocturia happens when I'm sleeping on my back. With side-sleeping I was able to reduce the incidence of toilet breaks down to approx. 2-3 times a night. Sleeping on my back would be similar to what you mentioned, ie toilet breaks occurring every half-to-one hour.

(Specific to the male readers) it's worth ruling out prostate issues.
Other things to check:
Urinary tract infection.
Aldosterone levels.
Cortisol levels.
Calcium levels (I've heard hypercalcemia can result in excessive urination).
Basically everything that can go wrong in the pathway from the kidneys, down, including kidney function itself.
Also, take note of water intake (is it excessive?). Are you drinking too much coffee/tea?

To those reading who are new to ME/CFS, one of the key approaches to management is the process of elimination, ie rule out the simple/basic/typical stuff, and if possible treat it and move on to the next challenge... noting this is my personal opinion only.
You're dealing with a multi-dimensional syndrome, ie you may find you need to treat X, which will impact Y, which subsequently will help you manage Z, where there seems to be no remedy to treat Z directly.

One of the strangest symptoms I noticed personally is the effect cold temperatures have. Basically, if I'm cold I won't stop going to the toilet. Literally, I'll finish and approx. 15mins later, full bladder.
My GP has identified this as a serious yet unknown concern, ie my intolerance to cold. This is an ongoing (separate) "longer term project" to possibly relocate to a warmer climate. I've spoken about this in another thread, but now it's starting to look more-certain... It's a long story potentially for another post/thread.

I'm currently working on a running-hypothesis on how to deal with the creatinine, which I started 'experimenting with' yesterday. Last night I managed to get a 4hr stretch of sleep, so it looks promising, however in my experience, things are quite changeable from day to day, ie too soon to reach any conclusions.

If there are any noteworthy discoveries I'm considering starting a new post instead of continuing to diverge from this thread's topic. A lot has transpired, and some things continue as a work in progress, but the key challenge at the moment is managing this nocturia.

 

[greyheron]

Instead of PEM or PESE we should call it LS for "life sucks". I think everyone would agree on this! "So daughter, are you experiencing LS today?" "Why yes! My LS is particularly acute right now, thanks for asking! I expect to have a terrible night sleep tonight since I will be laying down all day today!" (joke)