Solve ME/CFS Initiative - Editorial: PEM. It's time to Retire the Term

I get shades of PEM, if you’re at I want to die levels I’d call it a crash. Milder PEM for me might be immune activation, insomnia, lasting a day or two with reduced function, a crash is worse. But I’m bedridden so very little exertion sets off some symptoms which I’d call PEM , without it being a crash. I struggle to recall being mild and moderate and PEM then. I still had shades of it I think but my presentation is very immune. If people don’t have immune flares maybe it’s normal or ghastly automatic I’m dying feelings and little in between.

 

I think we are using different terms based on our level of illness? I'm not bed bound. I don't consider a crash 'delayed', my PEM is delayed, going from an almost non- symptomatic state to becoming completely disabled/distressed within 18 hrs from going over my energy boundary.

 

I wonder when/where the term "post-exertional malaise" originated.

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I got a hit from Google suggesting it was in the 1988 CFS "Working Case Definition" from the CDC, but it does not seem to be in that report.

I assume that this aspect of the disease [specifically, delayed-onset PEM] - perhaps under another name - had been recognized for a long tme, but, offhand, I can't remember if it shows up in the descriptions of the earlier outbreaks of the 1950's, for example.