The accounts detailing the devastation of post-exertional malaise (PEM) in ME/CFS are both moving and profoundly informative.
What post-exertional malaise (PEM) in ME/CFS feels like
Responses from ME Research UK Symptom Saturday PEM Survey
"...like having run
3 marathons with the worst bout of flu ever."
"In Dutch we have the word 'Terugval' which literally means when somethings falls (back), Something that was better became worse. It's like that. One tiny step forward, three big leaps back. Flare-up sounds like a temporary thing that happens, but the impact usually lasts much longer.
Usually it takes a few days before it fully manifests so it's really hard to pinpoint (people usually can't grasp this), and I have to be in bed, which can last for a couple of days up to months."
"My body and mind is drained of energy.
My arms and legs are a dead weight.
Talking becomes very difficult my voice becomes a whisper.
Chewing is [too] difficult.
I close my eyes and wait."
"In my pre-illness life, if I did something tiring, then rested or got an early night, I'd then be 'reset' back to normal. With ME, the reset function doesn't work properly. After doing something tiring now, I will rest, go to bed earlier, and still wake up feeling worse. The 'reset' now takes several days - sometimes weeks of careful management. It can be hard to tell apart from a relapse (more permanent deterioration) so the stakes feel very high & PEM can be very distressing for this reason."
"A sudden wall of exhaustion which hits very suddenly and makes the limbs feel leaden and shaky at the same time. It tends to hit around 48 hours after whatever exertion has pushed me to the limit and is usually triggered by minor activity like putting toys away or hanging out laundry...."
"For me, PEM is something different from the "usual" day-to-day reduction in function that I already live with. It is also something entirely different from feeling tired after doing too much. It feels more like my body becomes ill...
...The difficult thing is that it appears with varying degrees of delay. I may manage an activity - within the limited capacity I already have — reasonably well while I am doing it, and only hours later, or during the next day or two, does the full reaction set in. That disconnect between the activity and its consequences can make
PEM very hard to explain to someone who has never experienced it."
"It sneaks up on you. Might be obvious in hindsight but still surprises you. Suddenly, trying to do the simplest thing, that you were able to do yesterday, is either immensely difficult or impossible."
We are deeply appreciative that the community has shared their experiences with us. The accounts detailing the devastation of post-exertional malaise (PEM) in ME/CFS are both moving and profoundly informative. Due to the sheer, overwhelming number of responses to the survey, it is not possible...
www.meresearch.org.uk
