Seeking An Elusive Cure - article on Maureen Hanson and her Collaborative Research Center

http://www.ithaca.com/living/person...cle_6f583b1c-2252-11e8-ac43-bf8bfd211427.html

 

Thanks for posting that link, Andy. This is one of those fairly short articles that I find helpful to share with friends/family who know very little about ME.

I liked the parenthetical comment (which I've bolded) the author added about about PEM:

There's also a nice quote from Carol Head from Solve ME/CFS:

 

Is anyone else surprised to hear about "post exertional relapse" ?

It's new to me and I can't say I prefer it.

 

Just been trying to think of alternatives, Post Exertional Exacerbation has an unfortunate acronym, Post Exertional Symptoms maybe? I'd probably favour that because I develop additional symptoms, as well as increased levels of existing ones. Changing it about, Symptom Aggravation after Exertion (SAaE/SAE), although, to me, it doesn't cover additional symptoms occurring?

 

I was thinking that.

We're unlikely to have great terminology until we have a better understanding of what's happening.

 

Post exertional crash??

 

I don't mind post-exertional relapse. Malaise sounds a lot like fatigue.

The Bateman Horne Center uses both terms on their home page.

 

I’ve heard it before.

Some people don’t like malaise, as they feel it’s vague or has other meanings.
(I don’t mind it much, but that’s probably just my own background as it sounds a lot like a symptom of many types of infectious diseases to me, and I feel like that a lot, especially during crashes.

But, if it sounds different to others that’s just reflecting their different background; obviously we all have different experiences, and it’s a fair point that a good description should either not be ambiguous or at least well explained, and I think that’s not really going on here outside of our in groups.)


Relapse I think is intended to signify that symptoms in general get worse, rather than there’s this one symptom that occurs.


People say different things trying to make this PEM concept more clear.

+1

 

I don't think "relapse" is completely accurate, but only because a relapse is more serious than PEM (usually), so I don't find it objectionable or offensive at all. I prefer "exacerbation" for accuracy, though the PEE acronym is problematic.

But perhaps "post" could be replaced with something like "delayed"? That could also help with some people thinking PEM (versus other symptoms) starts immediately after exertion, or even during it Delayed Exertional Exacerbation doesn't sound too bad, though I like Post Exertional Relapse or Delayed Exertional Relapse as well.

 

Post-exertional neuroimmune exhaustion works for me.

 

That one spells Penis in Spanish! why we do not like that one (my kid thinks is hilarious).
Post-exertional crash, describes better for me. I do not have a relapse every time I have PEM. Crash = I go back to base number. Relapse, I go lower and do not gain back to base without therapy (selftherapy, which changes every time)