It's not malaise!!!

I prefer the term Post-Exertional Exhaustion, but that has an unfortunate acronym.

 

Absolutely agree, @Esther12. WTF is "neuroimmune exhaustion"? Putting aside the "neuro" for a minute, we definitely feel exhausted, but what's the point of saying "immune exhaustion", what does that add? Who knows for sure that we even have "immune exhaustion"? What if its immune hyperreactivity? All we know right now is the exhaustion bit, which is often accompanied by an ill feeling that feels a lot like immune activity.

And then adding the neuro on the front, what's that about? Some weird attempt to jargonise brain fog? Why can't we just say it like it is - physical exhaustion, cognitive impairment and a general sick feeling?

Post exertional symptom exacerbation might fit the whole picture.

 

I think malaise is a pretty good word. In standard medical language malaise means feeling rotten enough to have to go to bed and maybe pull the blankets over your head. It could be milder but if so the implication tends to be that going to bed might be called for sometime soon. And it can be as bad as it gets - unable to stand, widespread pain, complete loss of ability to think straight, even delirium and hallucination. And in medicine when a term is qualified by juxtaposition, as in PEM, it is accepted that it may have a slightly different and unique meaning (as in pretibial myxoedema, which is is different from just myxoedema).

My suggestion of blue cardigans (giving rise to the French term : Cardigan Bleu Therapeutique) come from the non-uniform that I imagined psychotherapists usually wear - or at least would have done in my youth. A blue cardigan would be considered an appropriate garment for a young woman wanting to appear friendly but professional. I suppose I also fantasised about quite a nicely fitting powder blue cardigan with the buttons done up except the top one. I admit to it being a sexist concept, but then...

 

Yep

 

I agree

 

The immune system is apparently complicated, it could be both, at the same time

 

Right

 

I have pointed out previously that though most people refer to the post-extertional symptoms of ME/CFS as "post-exertional malaise" or "PEM", in fact malaise (which is the feeling you get when for example you have the flu) is just one aspect of these post-extertional symptoms.

In the CCC definition of ME/CFS (see page 4) it says:

So malaise is part of the post-extertional symptoms of ME/CFS, but these symptoms also include increased fatigue, increased pain, increased brain fog (deterioration of cognitive function), and the worsening of other symptoms of ME/CFS.


Thus to be more precise, this array of post-extertional symptoms might more accurately be referred to as PES; however, since PEM is the generally used term, it might just cause confusion if one were to try to change it.

But where precision is necessary, it's a good idea to refer to post-extertional symptoms rather than post-exertional malaise.

In the International Consensus Criteria, they did try to change the name of PEM to post-exertional neuroimmune exhaustion (PENE), but that did not really gain any currency.

 

Mark VanNess referred to it as post exertional amplification of symptoms. PEAS.

 

Malaise includes.

 

In a medical dictionary, the term "malaise" comes across as something relatively mild and vague:

But I don't how the term is used by doctors on an everyday basis, and perhaps it is used to encompass a more severe state.

 

Common useage, i.e. my understanding, is that most people think it means feeling vaguely unwell, not actually sick, just a little off colour.

I presumably formed this opinion of how it's seen somehow, it may not be the correct medical usage, but it is as far as I know how the public in my part of the world view malaise.

I do not perceive it as a "helpful" word is describing my illness.

 

I like that.

 

Yea, it matters how the term is used and understood amongst lay people. Look at the trouble we had with "fatigue".