Posts

Showing posts from 2018

'Post-exertional malaise' - Does It Need a New Name?

Image
Yes, another post about nomenclature. Seems my having this disease, which I'll call SEID, systemic exertion intolerance disease, is appropriate since there are so many problems in communicating about it and I am a communications specialist, due to interest and talent and skill.

So, let's take on another term: "post-exertional malaise," aka "PEM."

I'm not the only one seeing problems with this term. Donna Pearson, a patient advocate, said at this summer's Chronic Fatigue Syndrome Advisory Committee meeting that the CDC website described PEM as needing to rest in the car after going to the store, too tired to drive home. She astutely pointed out that our disease has both stamina problem as PEM, but they are not the same. She said disease experts can be sought to confirm this, but in her case, what has been described as PEM is delayed from the triggering activity, most of the time ~ 24 hours. She pointed out that since PEM is a distinctive symptom for…

Lessons Learned about Death in America

Image