PEM-like descriptions and accounts in non-ME illnesses

[Lou B Lou]

I have been looking into this topic for a while. The more I look, the more I find post-exertional malaise discussed in other conditions (and in healthy controls). I started a list here.

I see there are more references in this thread so it needs to be updated.

Note the Beyond ME/CFS IOM report discusses healthy controls having PEM. "The prevalence of PEM in healthy control subjects is considerably lower than in ME/CFS patients, ranging from 4 to 8 percent". Page 80 - https://www.ncbi.nlm.nih.gov/books/NBK274235/pdf/Bookshelf_NBK274235.pdf

The confusion about this symptom is another reason I prefer the International Consensus Criteria - post-exertional neuroimmune exhaustion that has a much more comprehensive description. I wrote about that here: https://colleensteckelmeiccinfo.substack.com/p/pem-is-not-equal-to-pene

'Note the Beyond ME/CFS IOM report discusses healthy controls having PEM. "The prevalence of PEM in healthy control subjects is considerably lower than in ME/CFS patients, ranging from 4 to 8 percent". Page 80 - https://www.ncbi.nlm.nih.gov/books/NBK274235/pdf/Bookshelf_NBK274235.pdf '


Healthy controls, by definition, do not get PEM. What waffle.

 

[JemPD]

yes.

I must say i am grateful for your posts Yann, I often think 'yes thats exactly like me' & it helps so much, especially with the stranger phenomena like this.

Just tagging you @Jesse as I know you asked about this kind of phenomena & whether others experience it. Just came across this oats from a while ago thought it might be of interest

Edited to add: sorry I quoted myself - I was replying to @Yann04 in post #25 I can’t work out how to add link or quote to that post now (it’s about what happens when push through)

 

[Utsikt]

@JemPD here are the posts in order. Yann responds to PL, and Jem responds to Yann.

I get PEM in what I call a few different arcs.

This sounds similar to one I get on good days.

On these days I can go out in my normal pacing level and might do a bit more. As long as I don't sit or lay down I feel ok. Soon as I sit down I feel aches and stiffness creeping into my muscles, I start yawning and feel tired or fuzzy headed. My body feels like it's yelling at me to not let people talk to me and it's time to lay down.

This passes after about an hour or so laying down (sleep not needed). I may or may not get a more delayed PEM fatigue the next day as well.

I have that too. Like a sort of if I keep on pushing it I can kind of ignore my symptoms, my body seems to pump adrenaline and I do okay. But it’s once I stop that activity and the adrenaline wears down I start feeling awful.

yes.

I must say i am grateful for your posts Yann, I often think 'yes thats exactly like me' & it helps so much, especially with the stranger phenomena like this.

 

[JemPD]

That’s awesome thanks @Utsikt - exactly what I was trying & failing to achieve.

Incidentally the world and his wife now experience “terrible PEM” because they feel tired after doing … whatever…

The term is nearly meaningless now.

Just like every cold is the flu, every headache is a migraine, every lapse in concentration or forgotten birthday is brain fog, every blue day is depression… all tiredness after activity is now PEM
<sigh>

Oh and of cpurse all ongoing fatigue is CF & thus ME/CFS

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