The Rest Room: What actually is Post-Exertional Malaise? with Todd Davenport

[mango]

Podcast episode about PEM, well worth a listen

https://natashalipman.substack.com/p/post-exertional-malaise

Transcript here:
http://natashalipman.com/post-exertional-malaise-podcast-transcript

 

[MeSci]

Oh dear - the difference in language between UK English and US English again:

"We’re talking about bonked, the feeling of nothing left, not able to move your limbs."

Bonked means something somewhat different in the UK!

 

[DigitalDrifter]

But that also that physical and cognitive triggers were the most common. Emotional triggers were less common.

I think emotional exertion should be classified under cognitive exertion, separating it out could make some people think ME is psychosomatic.

 

[rvallee]

I think emotional exertion should be classified under cognitive exertion, separating it out could make some people think ME is psychosomatic.

Yup. IMO this is actually one of the the big tells that it's the psychosomatizers who are the dualists. They somehow want to separate emotions from cognition, as if emotions aren't a form of cognition that obviously must utilize resources and energy just the same. They want to separate intellectual thought as the only valid thinking, they are doctors after all, from mere feelings, what little people have, I guess. As if there is this separate thing running in the brain that doesn't have to make use of biology.

We start getting out of this mess once everything about anxiety and stress is made obsolete and the onus is put on exertion, and that one form of exertion or another makes little difference. It's always exertion in the end, whether it's good, bad, or extremely neutral.

 

[Hoopoe]

I think emotional exertion should be classified under cognitive exertion, separating it out could make some people think ME is psychosomatic.

The examples of emotional exertion given by other patients that I've seen were a wedding and birthday which involve a lot of sensory processing, cognitive exertion, and probably physical exertion in the case of the wedding.

I have maybe had one instance of emotions contributing to a crash. I was really excited about the genetics testing I was getting and the people at the lab were so kind. Then I couldn't calm down from the happiness and I think contributed to a crash, but all the other exertion would probably also have been enough for a crash.

 

[JemPD]

yes emotions are a doozy.

personally i dont find the emotion itself as particularly exerting, its the stuff i cannot avoid doing because of that emotion, that causes the worst of the PEM for me.

Lying still & breathing through it i find utterly impossible if i am agnry or have a strong sense of protest coursing through me, especially as the adrenaline gives me such a high degree of pain relief, alertness & increased energy/strength, it feels physically lovely while being emotionally unpleasant.

Equally sobbing in grief is like coughing, it really uses a lot of physical energy/muscle power.

But if emotions are intense they dont let go until i process them somehow - eg venting or crying, which just means that if i dont process them then the urge to distract to avoid them becomes more intense & i end up overdoing it online or with tv etc. So its a no win really.

Although i fully acknowledge what you said @rvallee... they are cognitive exertion just experiencing them.

 

[Hoopoe]

I suspect it's not the emotion per se but the brain being in an excited state, which can occur while experiencing emotions but also due to mental work. So it's the work that is the issue. Experiencing emotions seems to be a kind of work for the brain.

 

[Sean]

Considering how much of the human brain's work is in dealing with other humans, it is hardly surprising that it is hard work for people with limited cognitive stamina.

 

[Kitty]

To me emotion exertion often means something a bit different, though it would be hard to communicate quickly in two or three words, so it would always be open to misinterpretation in a short article.

The type that I struggle most with is the mix of emotional and social energy needed to engage with people who're not friends or family in order to progress something. Whether it's speaking with a financial provider, asking a neighbour to look after my cat for a few days, or arranging work on my house with a tradesperson, putting on the necessary social mask for that specific task is a huge effort.

It's like assuming a character for a performance. The fact that I have ME and autism is (usually) irrelevant to the conversation, so the more I can mask it and meet their expectations of a normal, cheerful interchange, the easier, quicker, and more successful the process is likely to be. It's knackering, and easily takes as much out of me as physical work.

 

[hibiscuswahine]

Emotions are emotions, they are not cognitive functions in psychiatry, i.e. attention, concentration, working memory etc.

I can have a strong emotion that might impact on my cognitive function but then it turns back to it’s baseline cognitive state.

If an emotion changes your behaviour in some way and you start thinking and behaving due to that, that could have an outcome down the track physically or mentally, or you could just think about the emotion and not act on it.

Eg. Like feeling positive that exercise will improve your M.E. One goes and exercises and feel worse and PEM’s oneself, but one thinks to oneself, I had such a positive thought and it made me feel good, it must work, try again, until one separates emotions from thoughts, emotions are just emotions, thoughts are just thoughts.

It’s what you do with the emotion. BPS decided what they thought we think, felt and behaved and applied their own theories to it, (well, brainwashing really).

But there are emotional states people find themselves in that will cause exertion, and for some, physical and cognitive exhaustion so I agree with the term emotional exertion.

 

[Trish]

Many activities involve emotions, and not just obvious ones like attending a wedding or funeral, but a wide range of social situations and work situations. They can all cause PEM, not only because of the emotional content of the event, but the physical, cognitive and sensory demands on the pwME.

I don't like it when commentators attribute all the PEM in those situations to 'emotions' or 'emotional exertion', when it's likely the other aspects contribute more.

 

[ahimsa]

Oh dear - the difference in language between UK English and US English again:

"We’re talking about bonked, the feeling of nothing left, not able to move your limbs."

Bonked means something somewhat different in the UK!

Just FYI, this must be some regional usage of bonked to mean exhausted because I don't recognize it. Zonked, yes, but not bonked.

Back to the podcast, I thought this bit was good (added some extra line breaks)

Often people know they have post exertional malaise or post exertional symptom exacerbation years before a clinician recognizes it. And there is a couple of reasons for this.

I think first of all, post exertional malaise and post exertional symptom exacerbation break a lot of rules about what clinicians think about how the body should respond to activity and to exercise.

And the whole constellation of symptoms and signs, number one, can be a lot for one person, one clinician to take in in terms of a diagnostic process.

And number two, our medical system is so siloed that if you have GI issues, then you go to one physician. If you have pain you go to another physician. If you have sleep disturbance then you go to another physician. If you have autonomic intolerance, then you go to another one.

So these symptoms and signs can be parceled out and viewed in a silo, which can limit the ability of one clinician to put them all together.

And so often it’s the patients who can tell us with certainty that the post exertional symptom and sign pattern is occurring. And there are certain things that patients can watch for and clinicians can listen for that we found, that can be helpful.

The first hallmark, of course, is worsening after exertion. This gets to post exertional symptom exacerbation versus post exertional malaise. So post exertional symptom exacerbation just refers to symptoms and signs that worsen after an exertion. It’s agnostic to time, it doesn’t necessarily imply how long those symptoms take or may last.

And so often, post exertional symptom exacerbation is used to describe symptoms and signs that occur anywhere within a few minutes to hours, to a few days from the exertion.

Whereas, post exertional malaise is really more symptoms that start to occur 24 to 72 hours after the exertion. And so they’re two separate phenomena, and very related, of course.

 

[hibiscuswahine]

Back to the podcast, I thought this bit was good

Yes, the bit at the end, (that I can’t seem to put in quotes), I would agree with the separation of PESE and then PEM could be useful.

But it is really hard to know if the PESE is going to turn into PEM and sometimes you return to baseline, (perhaps after a good rest/sleep for me) but then next day you wake up in PESE/PEM or your health baseline starts tailing off for no reason which frequently happens and can have multiple factors to it, that change all the time….

It is a tricky one, I do sort of agree with trying to delineate it but then educating pwME on what is what, but not impossible.

 

[Trish]

I haven't come across this separation between PESE and PEM before. I think it may add to the confusion, as for example NICE uses them interchangeably. But I do agree we need 2 separate terms for the immediate effects, which I call fatiguability, and the delayed effect which I call PEM.

 

[RedFox]

I use fatiguability as well. I know fatiguability and PEM are separate phenomena because I can exert myself, feel tired, rest and recover, then get PEM 12 hours later.

 

[dave30th]

Bonked means something somewhat different in the UK!

it can have multiple meanings in US as well.

 

[NelliePledge]

I use fatiguability as well. I know fatiguability and PEM are separate phenomena because I can exert myself, feel tired, rest and recover, then get PEM 12 hours later.

Or maybe not separate just immediate and delayed effects of the same process

 

[Peter T]

Or maybe not separate just immediate and delayed effects of the same process

I find what I call ‘fatiguability’ and PEM behave differently. If I start to feel fatigue building rapidly and stop whatever is triggering it soon enough, it rapidly resolves, be it standing too long, be it being in a noisy environment, be it cognitive exertion. The response is directly related to whatever is triggering it, and occurs more or less immediately, though it can add to cumulatively to triggering subsequent PEM.

Fatiguability lacks the paradoxical aspects of PEM, which generally occurs after a delay and which includes symptoms not obviously directly related to the triggering activity. Further PEM once triggered has a course of its own independent of any triggering activity/stimulus; it can go on getting worse over hours or even days even if the triggering activity/stimulus has stopped.

My feeling is that although experiencing increased fatiguability can increase the likelihood of triggering PEM and that fatiguability becomes more likely or happens quicker when in PEM, the two are distinct.

 

[dave30th]

I haven't come across this separation between PESE and PEM before.

I have only seem them used interchangeably. Not sure where this distinction has come from or who has made it.

 

[Ebb Tide]

The term 'bonked' for exhaustion is familiar to me in the UK from the cycling world, although my memory was that 'hitting the bonk' was more associated with not taking in sufficient nutrition and fluid on long rides.

It has the effect of wiping you out, but taking on fluids and snacks you can recover reasonably quickly, enough to get home.

But in the professional racing world getting it wrong can finish your chances of finishing well, hence the feed zones, and getting bottles and gels from the team cars throughout the race.