Post-exertional malaise and the myth of cardiac deconditioning: rethinking the pathophysiology of long covid, 2026, Charlton, Wüst et al

[Evergreen]

The biggest problem for me is that it perpetuates the fallacy that if you implement rehab in a personalised way that tries not to provoke PEM, people (a) will improve and (b) won't deteriorate.

Eh, "properly implemented" GET did this too, and those who promoted it believed this too.

Don't fall for it, kids.

 

[EndME]

I have learned the following from patients, some of which are not with us anymore today: PACE showed that these rehab strategies did not work usefully for people with CFS/ME independently of whether they have PEM or not.

It's time the researchers that always consider themselves allies and are the ones that say one has to listen to patients do as they say.

 

[Evergreen]

I have learned the following from patients, some of which are not with us anymore today: PACE showed that these rehab strategies did not work usefully for people with CFS/ME independently of whether they have PEM or not.

It's time the researchers that always consider themselves allies and are the ones that say one has to listen to patients do as they say.

Hear hear.

 

[Evergreen]

Eh, "properly implemented" GET did this too, and those who promoted it believed this too.

In case people with long covid aren't as familiar with GET for ME/CFS, this is from the PACE GET participant manual, right after talking about the physio using a heart rate monitor with them:

There is nothing to stop your body from gaining strength and fitness, as long as it is done in a carefully monitored way, relating directly with your own particular circumstances – started and progressed at the right rate for you. Good luck!

 

[Utsikt]

Plus we have some preliminary data (only presented at a conference as of yet)

from Germany from a specialized Rehab course that was tailored to Long Covid and ME. Guess what? Many people were worse after than they were before. Almost no one improved

(44% left with a worse bell score, only 13% with an improved one)

Oh, that’s bad! Do you have the source?

The aim of pacing is to avoid increasing FUNCAP scores in any domain. Harm reduction, as someone said in another thread.

It’s to try to avoid PEM, not just the kind of PEM that would make you worse off long term.

PS. a lower FUNCAP score is worse, not better.

 

[Kitty]

It’s to try to avoid PEM, not just the kind of PEM that would make you worse off long term.

Yes, but ultimately it's to avoid making your score worse. PEM does exactly that, and the idea needs to be encapsulated in as few words as possible.

PS. a lower FUNCAP score is worse, not better.

I usually get maths concepts upside down, so I write whatever I think it is then wait to be put right.

 

[Utsikt]

Yes, but ultimately it's to avoid making your score worse. PEM does exactly that, and the idea needs to be encapsulated in as few words as possible.

FUNCAP asks for an average day the last month. One episode of PEM probably won’t change the score much.

But PEM should be avoided by itself, regardless of the aftermath of the episode. Otherwise, we’ll get the «you’ll get better in a few days so it’s nothing to worry about»-approach.

 

[Yann04]

I wonder if we should substitute baseline for severity level, as indicated by FUNCAP scores

I often feel the severity level to be way too homogenising and honestly I feel it always overestimates my capacity.

For example my baseline is that a tiny sound or speaking will give me terrible pem to the point i havent spoken or heard a word for years. But I don’t think that’s very obvious by “very severe”.

And perhaps its survivorship bias but I feel atleast physically and sensory I am more severe than the vast majority pw very severe me ive interacted with. I think if my baseline was conceptualised as “very severe ME” a lot would be missed.

 

[Kitty]

FUNCAP asks for an average day the last month. One episode of PEM probably won’t change the score much.

But if you're not already putting a lot of effort into avoiding PEM you're going to have very frequent episodes, and that will change the score. It'll only get better if you improve your pacing.

Thing is, PEM is a debased currency. Everyone and their auntie claims to have it now. By utilising the best instrument we currently have to explain the basics of pacing and thresholds, it might help avoid terms that can be hijacked or are difficult to understand. FUNCAP's a brass tacks description of functional impairment—can you keep yourself clean, can you feed yourself, can you leave the house, can you walk to the bus stop. It's not hard to understand that.

 

[Utsikt]

But if you're not already putting a lot of effort into avoiding PEM you're going to have very frequent episodes, and that will change the score. It'll only get better if you improve your pacing.

Will it though? Because if you’re pushing through symptoms you’re already breaking one of the underlying assumptions: that you respect your limits and rest when in PEM.

It doesn’t ask «can you do things afterwards», it asks «do you think you’d be able to do things afterwards». Someone doing LP would probably score higher, even if they don’t have an actual improvement.

Thing is, PEM is a debased currency. Everyone and their auntie claims to have it now. By utilising the best instrument we currently have to explain the basics of pacing and thresholds, it might help avoid terms that can be hijacked or are difficult to understand. FUNCAP's a brass tacks description of functional impairment—can you keep yourself clean, can you feed yourself, can you leave the house, can you walk to the bus stop. It's not hard to understand that.

I’m not trying to argue against the use of FUNCAP in general. I think it’s very useful. But I don’t think it can be used to determine if something caused PEM to someone. Or even if they have PEM - we don’t know the false positive rates.

If I remember correctly, FUNCAP was found to be accurate within a severity group. So a range of ~1 point on a scale from 0 to 6.

In my view, FUNCAP is best used to roughly track long term trajectories, and to self-report impaired functional capacity for benefit evaluations etc. in a more accurate way than most FC questionnaires.