PEM-like descriptions and accounts in non-ME illnesses

Problem is how to measure (what would a 2 day cpet show?) and how to define. An up for grabs term still imo.

 

I wonder if that'll exist, given that it's not very well characterised in ME/CFS.

Unless it was tackled in one of the DecodeME questionnaires (I completed them but can't remember much now), we may need a research project to work out how to describe it, then to get data on what proportion of people experience which symptoms, when, and for how long.

 

For something unrelated I was doing today I searched for a definition of PEM/PESE. This came up (I hadn't seen this portion of the site Library Of Medicine before)

Postexertional symptom exacerbation

MedGen UID: 752115
•Concept ID: C2732413
•Sign or Symptom
Synonyms:

Excessive postexertional fatigue; Exercise-induced malaise; Post Exertional Malaise; Post-Exertional Malaise; Postexertional fatigue; Postexertional malaise

SNOMED CT:

Postexertional fatigue (444042007); Excessive postexertional fatigue (444042007)

HPO:

HP:0030973


Conditions with this feature
Autosomal dominant childhood-onset proximal spinal muscular atrophy with contractures

Myofibrillar myopathy 10

https://www.ncbi.nlm.nih.gov/medgen/752115

 

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.

 

Same. It feels good to have someone who understands. Especially the PEM from sensory inputs part.