Post-Exertional Symptom Exacerbation (PESE)

Pyrrhus

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Post-Exertional Symptom Exacerbation (PESE)

Post-Exertional Symptom Exacerbation (PESE) is a term that has been proposed to replace the term Post-Exertional Malaise (PEM).

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

Some say that "symptom exacerbation" more accurately reflects what PEM really means.

However, some say that "symptom exacerbation" seems to leave out the possibility of new symptoms that only occur during PEM.
 

wabi-sabi

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

We spend so much of out limited energy fighting over naming conventions. Yes, I know that words matter, but at this point it seems this fight is form over substance. It also risks re-inventing the wheel in terms of research (which we all know is difficult anyway). If we endlessly subdivide PEM vs. PESE some researchers who are not familiar with our endless internecine infighting may actually get distracted from the central idea of worsening with exertion and figuring out why and how that happens.

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). That's what we need to attack. We have the opportunity to help not just ourselves, but all sick people. We are the poster children for this since we have PEM/PESE/whatever you want to call it. But all sick people are benefited by rest, real healthcare, and social justice. Let's focus on that, and not what really amounts to a spelling error.

End of rant.

Isn't there some Monty Python sketch about a rock band fighting over their name instead of making music? That's us.
 
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If we endlessly subdivide PEM vs. PESE some researchers who are not familiar with our endless internecine infighting may actually get distracted from the central idea
agree

But all sick people are benefited by rest, real healthcare, and social justice.
my daughter's dear friend just "got over" a bad case of COVID. She will be heading back to her 24 hour work shifts in surgery......

I"m trying to WARN my daughters' best friend that THIS IS DANGEROUS.

How do we protect people we love from injuring themselves long term because of failing to take these issue seriously?

I hate telling my 39 year old daughter to Warn her best Friend (and warn my own daughter, too). About how bad long COVID could be...

I think "malaise" is more accurate because for me it doesn't necessarily exacerbate but is it's own special thing.
PEM comes with is own unique set of symptoms...and the poisoning event itself. It seems therefore I don't like symptom exacerbation. The later also has a way of trivializing the situation,
 

wabi-sabi

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Ok, one more little bit of rant:

The name PESE was given to long COVID because the initial long COVID researchers were unfamiliar with ME/CFS and PEM. Now sure, you can argue that ignorance is bourn of stigma (and they sure are intertwined), but I think that it's this ignorance that is the main problem we need to solve. We wouldn't even be having this argument if anyone outside our echo chamber had heard of PEM or ME/CFS.
 
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We wouldn't even be having this argument if anyone outside our echo chamber had heard of PEM or ME/CFS.
whatever happened to literature reviews? Your working in an arena of Post Exertion....illness worsening...following viral infection (COVID in this case). You don't review the literature?
 
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And 24 hours work shifts?! That's inhumane and dangerous for healthy people and sick people.
she is a veterinary surgeon and maybe I exaggerated. But its so similar to the medical doctor situation: ridiculous long hours and lack of sleep. And why is that occurring, thats how errors and mistakes occur. Why is this system like this?
 

wabi-sabi

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Your working in an arena of Post Exertion....illness worsening.
But! BUT!
Everyone knows exercise benefits every condition! It's not physiologically possible for exercise to make a person worse! We are seeing a totally novel and unheard of condition, so there is no literature to review!
 

wabi-sabi

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Why is this system like this?
I don't know...

But it came to me on one night of insomnia that doctors treat us as cruelly in terms of rest and "weakness" as they treat themselves. While people go into healthcare to be kind and do good, the system sure tries to beat it out of them. If healthcare treated healthcare workers with compassion, there would be more for everyone.
 
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literally we are being poisoned. by whatever leaks out, what ever somethings circulate...

Acronyms suck and should be pronounceable so you can keep reading the sentences they reside in. PEM at least you can sort of say it: it corresponds to a syllable and is like a word. It makes some sense in our brains.

PESE PESF PESFFEFEISn'a/fklaFNBS/sc
 

Pyrrhus

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The name PESE was given to long COVID because the initial long COVID researchers were unfamiliar with ME/CFS
I'm not sure what you're referring to, but the term PESE existed years before the pandemic. It just got a bit of momentum when NICE in the UK adopted the term PESE in its new ME/CFS guidelines late last year.

I don't know of any connection to Long Covid, other than the fact that it happens to be slightly more popular in the Long Covid community than it is in the ME/CFS community. But most people don't seem to have any strong preference, as reflected in the polling above.

Hope this clarifies.
 
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I do not think this is a really good use of anyone's time, to be brutally honest. I would leave it at PEM for the sake of maintaining consistency across research. If PESE naming is going to be the deal-breaker for the disease to win or lose a grant, it may be worth the debate. But I highly doubt it considering that the vast majority of the general population does not know any of these terms or care one way or the other.

Having a condition not being named as it should is not exclusive to us. For example, "Rheumatoid Arthritis" is another one that the name does not make any justice whatsoever to the condition, as joints are just one part of the organs affected by a systemic auto-immune condition, and the first one people could see a long time ago. But I do not see the name stopping research and therapeutics.

Instead of fighting naming, I wish we could use Long Covid as an opportunity to explore new biomarkers. I do not know if this went unnoticed, but the $8 million Bocidelpar study for ME/CFS, for example, is not using ANY of those debatable ME/CFS criteria as acceptance for the trial. It will instead use objective thresholds from the iCPET results. I think would add more value, and I wish we start seeing it more often as diagnosis tools and in clinical trials. Not necessarily the iCPET, but in general. Dr Alain Moreau, for example, can seemingly diagnose both ME/CFS and Fibromyialgia using microRNAs now: