Post-exertional situations
PEM?
PENE?
PESE?
Although the above letters might look like one of those riddles (“What comes next in this sequence?”), they are actually abbreviations for…
Post-exertional malaise
Post-exertional neuro-immune exacerbation
Post-exertional symptom exacerbation
Which basically mean: feeling REALLY, really crappy after exertion/energy expenditure/effort, in a higher intensity and quantity than you would expect in relation to the activity.
This is present across most chronic, invisible illnesses - particularly ME/CFS and increasingly in Long Covid. For simplicity’s sake, we’ll use the word PEM in this context, but people with lived experience may also use language like…
Crash
Setback
Flare up
Payback
So what is actually happening when someone is in PEM? Everyone wears it differently, but it tends to go a little like this:
The body undergoes inputs and outputs (exertion/load/activity). This can be physical, cognitive, emotional, environmental, or sensory. The contexts can be fun, or boring, or dangerous, or infuriating, or seemingly quite neutral, but the body (namely the brain/nervous system) registers them all.
Load either singularly or cumulatively goes above the body’s threshold, or baseline. “But where is the baseline?”, I hear you cry. Frustratingly, it can change all the time, which is why symptoms and capacity can also fluctuate wildly. We’ll do another post about finding baseline with your clients!
Timeframes can also vary, but for most people, PEM happens 12-48 hours after the overexertion and can last anywhere from days to months, depending on illness severity. This can make it tricky to identify what caused the overload, and can also create a false reality where someone might feel that they’ve “gotten away” with a big day, and go to do more again. Some people also experience acute PEM, where symptoms kick off on the same day - for example, getting home from an outing and needing to go straight to bed.
PEM can feel like the start of a sickness (sore throat, tender glands, flu-like symptoms). It is not “just tiredness”, though most people wish that it was! It can be described like “gravity has been turned up”, with a big dose of brain fog to top it all off.
The exact pathophysiology of PEM is unknown, however objective data shows a decrease in cardiopulmonary capacity, decreased muscle strength, the presence of inflammatory cytokines, oxidative stress and decreased neurocognitive capacity whilst PEM is present.
Although PEM brings on illness symptoms, it is not viral or bacterial in nature, however it does need to be respected as such. It calls for deep rest and low stimulation while still engaging with life’s essentials in a manageable way - this could look like listening to an online school class from bed with the brightness down low, or driving to the dog park and sitting on the bench rather than walking the dog. Please note these are examples only and require a deep understanding of your client’s symptomatic baseline to dial up and down from.
Conditions with PEM as a feature are not psychological in nature, and this is not “all in the mind”. Therefore, you cannot think your way out of PEM, or attribute it to depression, avoidance or anxiety. It is a real neurological and immunological event.
Just like any chronic illness state, experiencing PEM can certainly bring up uncomfortable emotions and secondary mental health issues. Feelings of shame, blame, loneliness, FOMO, frustration, anger, sadness, relationship issues and all round confusion are all valid and are worth seeking support for.
Here at Connection Medicine we believe in pacing first and foremost to prevent and lower the incidence of PEM, which we investigate deeply at our flagship intensive course: Invisible Illnesses for Health Professionals.
