@RobWust appreciation post: tldr: post-exertional malaise (PEM) is NOT a choice. In 2024, an amazing paper was published showing us some key features unlocking the physiology PEM in #LongCOVID. Curious minds would read a paper like this and view 1/ - ThreadSky

putrinolab.bsky.social • 11 days ago

@RobWust appreciation post:

tldr: post-exertional malaise (PEM) is NOT a choice.

In 2024, an amazing paper was published showing us some key features unlocking the physiology PEM in #LongCOVID. Curious minds would read a paper like this and view 1/

Comments

coastalthinking.bsky.social•11 days ago

📌

lifeatthewindow.bsky.social•11 days ago

Saving this to read to my psychiatrist at my appointment tomorrow if he dares blame me PEM / MECFS on a psychological cause. I would send him the paper. But he doesn’t give his email out to patients… 📌

khuruuk.bsky.social•11 days ago

This paper, from 2023, was also very valuable. Yale did invasive cardiopulmonary exercise tests, showing PEM effects were physical in nature.

(At least, I think this is the paper?)

https://pmc.ncbi.nlm.nih.gov/articles/PMC10088277/

khuruuk.bsky.social•11 days ago

Direct from Yale link:

https://news.yale.edu/2023/12/19/study-helps-explain-post-covid-exercise-intolerance

lifeatthewindow.bsky.social•11 days ago

Tysm!

no1sarah.bsky.social•11 days ago

This explanation (refuting allegations that PEM is deconditioning) from the current issue of Nature is more accessible than the original paper but is a strong argument for disbelieving drs, etc:
https://www.nature.com/articles/s41467-025-56431-7

lifeatthewindow.bsky.social•11 days ago

Thanks! I’m saving these links. Hope others are seeing these too ☺️

lifeatthewindow.bsky.social•11 days ago

Thank you! 🙏🏻

caitbsky.bsky.social•8 days ago

In case he’s confused, you can’t create abnormalities in muscle biopsies with your mind 😐

lifeatthewindow.bsky.social•8 days ago

He’s a psych who based his career on using CBT for people with illness like ME 😬 First time I’ll be seeing him. My appointment was postponed so we’ll see what happens next week 🤞🏼

caitbsky.bsky.social•8 days ago

Some of them can’t acknowledge the years of harm they’ve caused. Good luck 🍀🤞

helldogbe.bsky.social•11 days ago

If you want something more accessible than the entire Rob Wüst study there are some good articles about it:
https://www.nationalgeographic.com/premium/article/post-exertional-malaise-me-cfs-exercise-energy

lifeatthewindow.bsky.social•11 days ago

Thanks for this! Very helpful for my cognitively impaired brain. I struggle to understand the sci lit these days. Very annoying!

helldogbe.bsky.social•8 days ago

You're welcome. I've been using a lot of tools to summarize papers and videos as I can no longer process them either.

On top of that the cognitive exertion causes a lot of PEM in the days afterwards, so it's like a corporal punishment for exercising the brain :-(

helldogbe.bsky.social•8 days ago

How did the psychiatrist appointment go?

Am also having trouble with my new one referring me to a CBT+GET clinic after my previous one, that was firmly opposed against the biopsychosocial model for ME/LC, retired. Scary times, especially after much damage due to previous exercise programmes 😭.

lifeatthewindow.bsky.social•7 days ago

It was postponed til next week. Thanks for asking. I’ll let you know as it sounds like we’re in a very similar situation! It’s an absolute nightmare, isn’t it? I’m really worried about it. I have an advocate who’s attending the appointment with me 🤞🏼 Sorry you’re in this position too.

diamondqc.bsky.social•11 days ago

here's a non-paywalled version for anyone who needs it

midwesternpunk.bsky.social•11 days ago

Thank for sharing this and discussing the huge ego issue we have in science! Not enough people understand just how much ego is hurting science rn

frogviolet.bsky.social•11 days ago

It’s in all of academia. It’s so disappointing.

kellymeiners.bsky.social•11 days ago

As a PT I’ve tried and failed over a 100 times to gently return to exercise from a severe state. If it was possible I’d be cured by now. I decline every single time I attempt to push myself. It’s not mindset or a “preference” issue but completely physiological.

mckatt.bsky.social•11 days ago

I have seen so many Doctors, and specialists and have been a part of a Long Covid Clinic who six years in, still refuse to address LC ME PEM in any meaningful way.

I never understood the concept of Gaslighting until 2020.

Thank you for your tireless research and advocacy.

chuckybrown.bsky.social•11 days ago

My sister suffers the same problem and she's not a liar, let your insurance company know with doctor's cert. they will comply.

always4bangtan.bsky.social•10 days ago

📌

brendancrabb.bsky.social•11 days ago

Thanks for the thread David. Hugely important points about the biological, not psychological, drivers of PEM, a syndrome of long COVID

oevie.bsky.social•10 days ago

📌

putrinolab.bsky.social•11 days ago

it as a crucial bread crumb in developing a more detailed
understanding of the pathobiology of PEM. Unfortunately, too often in science, we see that people with old ideas, big egos, power and privilege find curiosity and fresh ideas threatening to their chokehold on a field. 2/

putrinolab.bsky.social•11 days ago

Regardless of whether it will lead to a better life for patients or new emerging treatments. I appreciate Rob’s team for doing the hard work in this recent response to not let a facile and flimsy attack on their work stand unanswered. This is a great rebuttal in defense of 3/

putrinolab.bsky.social•11 days ago

their brilliant work and a reminder to everyone who is studying, treating or experiencing a PEM:
PEM IS NOT A CHOICE.
PEM IS NOT DECONDITIONING.
PEM IS NOT ‘EFFORT PREFERENCE’ .
PEM is a physiological disease process.
PEM occurs in bodies that are experiencing metabolic
4/

shelleyk.bsky.social•10 days ago

📌

shelleyk.bsky.social•10 days ago

📌

putrinolab.bsky.social•11 days ago

dysfunction that we have to identify, understand and manage before people can recover.
You cannot think, exercise or hope your way out of PEM.
The ability to be truly “preferential” about the effort one can expend on any given day is a privilege that most with #LongCOVID or 5/

putrinolab.bsky.social•11 days ago

other infection-associated chronic illnesses such as #MECFS and chronic #lyme would kill for. Attempting to frame PEM as a preferential state is scientifically invalid and unusually cruel.

Thank you to Rob and team for fighting the good fight. /end

ogredragon.bsky.social•11 days ago

I have a disease that came for a ruffed grouse with a black spot on its breast... It caused me to be diagnosed with Fibromyalgia and many other diseases. I assumed it was a Tick infection in the bird.. It is Much Like ALPHA GAL.. virtually every food gives me a form of allergic reaction.

dharmadreamer.bsky.social•11 days ago

I had covid meningitis which turned into epileptiform discharges in my frontal lobe, as well as painful neuropathy and thanks to recurrent EBV, long COVID. PEM is real. I’d kill for the stamina and the body I used to have before covid.

thinkfungus.bsky.social•1 day ago

“Chronic Lyme”
@immunologic.org @marcveld.bsky.social
Is it ok to write a paper with a scientist engaging with pseudoscience in so many ways?

karenwestphysio.bsky.social•11 days ago

Rob Wust's article has been very useful in helping one of my patients to slow down. I'm very grateful to him.

winterpancake.bsky.social•10 days ago

Who would choose malaise anyway

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