Thread by @leowmya

(1/15) PEM explained
When I woke up the day after jogging, I felt terrible, although terrible is probably an understatement. It is a feeling that healthy people can hardly imagine. It feels like having a flu, a hangover and a jetlag at the same time.

(2/15) At that time I wasn’t able to make the connection between yesterday's jogging and the terrible feeling the next morning.
Today I know that I experienced my first PEM back then.

(3/15) What is PEM?
PEM stands for Post External Malaise and refers to the worsening of symptoms after minor physical and/or mental exertion.

PEM occurs immediately after a performed activity or with a latency of approx. 12 to 48 hours thereafter and may persist for several

(4/15) hours, days, weeks or result in a permanent worsening of condition. For a diagnosis of ME/CFS, PEM is required. There is no ME/CFS without PEM. ME/CFS sufferers also refer to PEM as a "crash".

(5/15) Physical and purely cognitive activities or emotions can cause PEM as well. This applies for negative and stressful as well as positive and joyful activities.
The more severe the ME/CFS disease, the less it takes to trigger PEM.

(6/15) This means that in my stage back then (mild) PEM occurred when I was doing activities like cleaning the apartment, walking around town for a few hours, or playing an exciting game of FIFA with friends which also stresses the body (regardless of positive or negative stress)

(7/15) Today it is completely different. At my current stage (severe), PEM occurs after just about everything except lying in bed and doing nothing. That means after I have been on the phone with a friend too long or after watching an action-packed movie or football game that

(8/15) gets me stirred up. Due to orthostatic intolerance, sitting or standing alone (orthostatic stress) can lead to PEM. So if I try to sit for too long I get it as well. And yes, it's just as awful as it sounds. You have to plan exactly how much energy you can use without

(9/15) falling into a crash.
Say, you can't have several friends over during one day, you can't talk to one friend for more than an hour, and you can't write a text like this in one go. ME/CFS has a lot to do with time management and planning.

(10/15) Drive and motivation are undiminished in ME/CFS sufferers. Trust me, there is nothing else I wanna do more than be active again, motivation is not an issue.
From the outside, however, it often seems as if we lack motivation.

(11/15) The opposite is correct. When we pursue this will to get up and be active, we get it back twice as hard in the form of symptoms. For doctors this is very difficult to understand, they assume we are listless and therefore suspect other diseases such as depression.

(12/15) If you tell them that you get a flu and a hangover feeling when you go after your will to get up, they won't believe it, because they don't know such a thing. For sufferers in the lowest stage (very severe), PEM can

(13/15) occur after even less activity. This means that nothing else is possible except of lying in a dark room and doing absolutely nothing. Looking at a screen for too long -> crash. Being exposed to light/noise - crash. Talking -> crash. And so on.

(14/15) PEM also has many different degrees of severity. So if I do something very exhausting like taking a shower for too long, afterwards or the next day I feel like I have a bad flu and if I only slightly overexert myself PEM can also manifest itself with a scratchy throat

(15/15) and a bit of a hangover feeling.

#mecfs #mecfsawareness #pwme #myalgicencephalomyelitis #chronicillness #chronicfatigue #mecfsrecovery #longcovid #mecfsfighter #mecfsgermany #mecfswarrior #millionsmissing #chronischeserschöpfungssyndrom #pots #postexertionalmalaise #pem