Is PEM a crash? Is a crash PEM? Semantically distinct? Or distinct phenomena?

My question really is about the semantics of 'crash' and 'PEM'. I guess I used to use both these words somewhat interchangeably and wanted to ask PRers what they think.

In my experience with ME, PEM, or a worsening of symptoms, happens after mental or physical overexertion and only when I have too many periods overexertion over a short enough time without sufficient rest (or a continually long overexertion) then the PEM continues to build until I have a crash. Rarely too I've had crashes that seem to have come out of nowhere and didn't appear to be preceded by PEM.

So these words are distinct but related phenomena to me. What do you think?

 

I don't crash anymore but it has happened on several occasions about 10 years ago during a period of about 5 years when I was in bed a lot but not bedridden.

PEM is what I went through for about 25 years and then during that 5 years I could crash but not all the time. Things had to be bad for me to crash which would involve crawling on the floor and sometimes nausea but not often. But I would have really, really bad cognition issues.

I hope that made sense.

 

Yes, that's exactly how I see it.

 

Seen this question asked by several people on social media recently.

"To #pwME and #LongCovid - is a crash the same as PEM, to you? Or are they different?"

At time of posting, of 812 voters on the Twitter poll, 60% said that they were different.

 

That is really interesting. I definitely have symptoms on the day I over exert that results in feeling a small headache and then having severe insomnia when I try to sleep and I know the next day is going to suck. Then the next day I have severe headaches and fatigue. I haven't ever separated what I call them but there are distinct phases in the initial aftermath of 5-10 hours and then the post 12 hour point for a week to a month.

 

I just assumed PEM was the medical term and crash was the everyday equivalent.

 

I see pem as a more short term thing three to five days of significant worsening of symptoms a crash on the other hand leads to a major drop in functioning for a lengthier period of time five years and counting since i was tipped into severe .

 

Interesting question. I've never distinguished a difference, PEM has always been PEM to me and a crash to me is a different name for the same thing we call PEM.

I have noticed different types of triggers for PEM though, that are brought on by immediate, delayed and accumulated exertion. Accumulation is the worst causing a level change in ME, just from my own experience.

 

I’ll be honest I use both in ways in my head that apply to very distinct things. A crash can be caused by a virus, after I got first vaccine, as well as PEM type stuff. Though I guess those are exertions. Something eg building noise can cause PEM but the amount, frequency vs breaks can either ‘reduce my envelope’ or put me in a crash and then do exertion on top of that if still going.

PEM doesn’t have to be an ‘all out crash’ but is ‘post exertion’ and if a defined cause you feel (and can predict) when it ‘hits’. You can have rolling PEM where you layer overexertion onto effects of prior overexertion. Once it’s a crash and eg you’ve got noise from building works/are talked at with questions or are stranded somewhere uncomfortable etc that’s in need of a term in itself.

PEM being the ‘hit’ 36hrs (sometimes 12hrs) later that can wake me up in pain in the middle of a deep sleep as my body suddenly feels like bone-deep aching EVERYWHERE. Easy and straightforward this example where you know you’ve got a ‘trip out’ and you know it’s so much over ‘you’ll deffo pay for it’ even if rest around it to limit that. Here is where a crash = PEM. And the crash to me starts when symptoms hit and if I’m not in bed I need to get there.

of course to a layperson I’d call that a ‘crash’ because they get it as ‘out of action’. from a ‘what is it’ to someone understanding cause and effect I might say PEM.

But a crash also used to be when less severe and trying to work ‘a timed crash’ by taking a week off every six weeks just to be stuck in bed - if I left it too long between it would hit anyway or I’d be doing the reverse ‘ascent of man’ (walking more slouched each day).

I could have PEM where I’m not crashed out for days but ‘carrying it’ and have the symptoms but at a lower level from a few days prior. I’ll tell laypersons‘I’m in PEM so keep it brief and quiet’ if something urgent crops up.

What I don’t know to do with is the ‘system specific’ exertion induced debilitation and symptoms eg cognitive neuro or arms more immediate impact re PEM eg I immediately can’t support my own arms for hours if I use them too much

and the fact that ‘robbing Peter to pay Paul’ where I’m overdoing it constantly (either not quite enough with just enough breaks to still push on rather than being ‘out’ with PEM or not giving FULL recovery time from PEM just enough I can function to the next urgent thing in diary) but know just enough.

These eventually lead to crashes and relapses but as it’s more cumulative it’s not as distinctive as PEM and which of these it is based on what I’ve been doing (and payback ‘I’ve got coming to me) + how long it will last and how confident I am I’ve not done permanent significant deterioration that just needs ‘resting off’ like flu bout or glandular fever episode

 

That's amazing to me that you call a crash worse than PEM. For me PEM is the worst that ME can get. It wasn't until very severe ME that I really got to experience just how bad PEM could be.

At very severe ME in I was in a rolling PEM with layers of PEM on top. So I really got to experience the hell of it.

Interesting though to hear others thoughts and experiences.

 

I'd be really interested to hear other MEs experience of very severe ME and if they can distinguish between a crash and PEM. I just can't seem to relate to a crash. For me it is PEM. PEM to me is more than crashing, at it's worse it is the most devastating and hellish place that is agonizing to go through.

 

A crash is where being able to drag myself/crawl a few meters along the hall to the bathroom, only passing out a time or 2, for a little involuntary rest, takes forever.

At the more extreme end anyway.

That's on the physical side of it anyway somewhere I haven't been for several years.

Cognitively, I crash much more often.

 

Yes, I notice a difference at moderate ME now, my PEM is not as extreme so I understand what you are saying here.

At very severe levels of ME you really get smacked up constantly with PEM, it really is a place you'd never want to experience. I couldn't bear to ever experience those years again. Such a desperate existence.

Please excuse the way I talk. I still have PTSD from it.

 

Personally, I use crash to describe when an over-exertion has brought about an immediate, or close to immediate, increase in symptoms. Typically I'll almost always need to sleep it off and one or two hours will resolve most, if not all, of the increase in symptoms. For me PEM is the same or a similar state always delayed in the way described in the various criteria but I'm unable to nap to resolve it, I just need to generally rest as much as I can and wait it out.

 

Shows how differently we use the word. I use crash for the longer term stuff and not normal PEM.

As an example I had a medical appointment that required travel. Had normal PEM after which turned into 2 separate bouts of different viral symptoms lasting for about a month. To me this was a crash.

Others might have a different term for this longer response though?

 

Yes, for me i would say that all crashes involve PEM but not all PEM leads to a crash. Crash for me means total physical & mental collapse - a dramatic & fast total loss of physical and mental function, which happens when i am forced due to circumstances, to push through PEM - when the adrenaline runs out and my body & mind just gives out, i will mumble & slur "i crashin"...

After which i am unable to move without vomiting, unable to drag myself along the ground more than a foot or so, cannot communicate, or understand what is being said. Pain, proprioception completely haywire etc. Just a blob with everything i have within me taken up with enduring the next 10mins, & the next. Thats what a crash is for me.

I imagine that as a very severe sufferer - how can you crash (as i describe it anyway)? If you in that state & worse all the time.

There is nothing to excuse.