The Rest Room: What actually is Post-Exertional Malaise? with Todd Davenport

[Ravn]

I haven't come across this separation between PESE and PEM before. I think it may add to the confusion, as for example NICE uses them interchangeably. But I do agree we need 2 separate terms for the immediate effects, which I call fatiguability, and the delayed effect which I call PEM.

Yes, this is confusing since everybody else is using the two terms interchangeably.

But, tongue firmly in cheek, maybe it's our fault. Workwell have been pushing their PEM Time Course for some time. This includes what they call "immediate PEM" (e.g. breathlessness & fatigue straight after exertion), what Trish calls fatiguability and what I tend to call common-garden-variety exertion intolerance and what still others call post-exertional fatigue.

We've been critical of Workwell lumping this "immediate PEM" together with PEM as we traditionally understand it. In a nutshell our criticism (in many other threads) centers on the confusion this lumping causes for people who don't understand PEM. Many people with many conditions, from deconditioning to heart failure, can experience the symptoms of "immediate PEM" without ever going on to ME-PEM. Cue people experiencing "immediate PEM" - and only "immediate PEM" - being misdiagnosed with ME.

Maybe Workwell have been reading here and taken our concerns to heart and this new PESE/PEM distinction is an attempt, albeit a confusing one, at separating the two phenomena? If so, I welcome the development. But clearly the terminology needs some work, we need informative, not confusing.