The International Consensus got it wrong!

[Andrew]

First, I want to commend the International Consensus group for taking such an assertive and necessary step in redefining our illness. But one thing troubles me greatly.

In the International Consensus they use the term Post-Exertional Neuroimmune Exhaustion (PENE pen ?-e). Exhaustion is just another word for fatigue. I don't have post-exertional fatigue. I have post exertion symptom exacerbation. Many of use don't feel more fatigued or exhausted after exertion. We feel sicker.

Here's a definition I found on the web:

Fatigue (also called exhaustion, lethargy, languidness, languor, lassitude, and listlessness) is a state of awareness describing a range of afflictions, usually associated with physical and/or mental weakness, though varying from a general state of lethargy to a specific work-induced burning sensation within one's muscles.

Please note the word "exhaustion" in there.

I don't think many doctors will soak in the fine distinction because the word "neuroimmune" is there. And we are really not at a point where we can say that our immune and nervous systems are exhausted. Sure, there is some things pointing to mitochondria problems, or our immune system being overactive, but there are also things pointing to Encephalomyelitis as a cause for immune abnormalities and neurological problems. And that's not exhaustion.

I'd write to someone about this, but I don't know who to contact and whether it's too late. There is nothing wrong with simply calling it "post exertion symptom exacerbation" (pes-e) It is describes what happens, and without ignoring aspects like the other dynamics.

If anyone agrees with me, maybe you can contact one or more of the authors asap. I'm so sick right now I can't do much more than write this.

 

[Ember]

I hope this quotation will help you rest a little more easily:

"Accordingly, the primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world."

 

[Wonko]

I found the term neuroimmune exhaustion to be a much better fit to my symptoms than malaise.

 

[LaurelW]

I decided to Google PENE one day to see if anything would come up, and the first thing I got was the Spanish-language Wikipedia article about the human penis. I think they should change the initials.

 

[WillowJ]

they were being kind, dumping the dreaded F word (which ought to be a legitimate medical term which should imply a potentially seriously problem, but somehow isn't seen that way) for us,

and also getting rid of "a vague feeling of discomfort" [definition of malaise]. One thing PEM/PER/PENE is not is vague, and discomfort is a paltry sort of a description for sure

I'm not convinced there's a good way to describe PEM/PER/PENE in a single word or phrase, without perhaps coining a new one. Of course, Ramsay's "general awfulness" is pretty good but not very particular.

 

[Francelle]

I like that term PER SickofME (hehe -sorry I can't bring myself to say the other initials!!). I think PER fits in with what Andrew was alluding to also. Additionally what LaurelW said about the meaning of PENE in Spanish makes it probably quite an inappropriate acronym to use.

 

[Andrew]

We actually had a long discussion about this here: http://phoenixrising.me/forums/showthread.php?4956

Out of that, my favorite is Post Exertion Symptom Exacerbation (PESE).

 

[Firestormm]

Of course PENE is also a type of pasta

 

[Francelle]

I've decide to keep my name and argue that I am sick of 'CFS' the name.

A good spin on your name sickofcfs!!!

 

[justinreilly]

I decided to Google PENE one day to see if anything would come up, and the first thing I got was the Spanish-language Wikipedia article about the human penis. I think they should change the initials.

haha! PENE is much better than Malaise, but I agree it doesn't totally faithfully describe the event. With PESE, the mentioning of only symptoms could be used by Wessely to imply that only symptoms increase, not signs or pathology. The only problem with Relapse is that if you're sick and you get sicker, that's not really a relapse, it's just an exacerbation.

I would like PEDE, Post-Exertional Disease Exacerbation, or is that short in Spanish for pedophile??