It's not malaise!!!

Sue Klaus

Sue Klaus

Established Member
It's time to remove the word malaise from post exertional problems in mecfs. Malaise doesn't come close at all to describing what that actually is. It's not malaise. It's a full-on mental and physical crash. It's like a living death. There is no way malaise should be used to describe this.
 
I suspect that most would agree with the inadequacy of the word malaise. The difficulty arises in trying to find a word with which to replace it.

There is probably no single word to describe the experience of all people with all the different degrees of severity and at different stages of the illness.
 
Doesn’t it come from medical jargon? (aside from the literal French translation which I understood from my school French to mean ‘illness’, although I’m thinking now that might be ‘malade’)

I think I have understood it to refer to a general feeling of unwellness, that feeling you get when you are ill that isn’t just the sum of specific symptoms, but something more that underlies it all and makes you feel crap.

I think of ‘malaise’ as a blanket on top of everything- or underneath everything. Take all the specific symptoms away and i would still feel ill.

As such I’ve always quite liked it, but haven’t ever really questioned it!

As I’m writing this I think I’ve taken my own meaning from the word that fits quite well for how I feel that I can’t be specific about!
 
A number of different definitions of the word itself:
  • a general feeling of discomfort, illness, or unease whose exact cause is difficult to identify.
  • an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness
  • a condition of general bodily weakness or discomfort, often marking the onset of a disease
  • a general feeling of being ill or having no energy
As has been said, what other word, acceptable to the medical/scientific community, could be used? Perhaps Post Exertional Symptom Aggravation is a better description of what happens, but doesn't do much to capture how bad it can be for a lot of people.
 
I actually do sometimes suffer from malaise. When it strikes I have found that reclining on my chaiselongue clutching my smelling salts and a kerchief can bring some comfort.

I also have ME, and when those symptoms strike I have found that even if I lie down in a dark quiet room I can feel like a zombie who's just been run over by a truck.
 
My problem with malaise in the context of ME is that it seems to suggest we are fine until we over exert ourselves, then we feel a bit unwell.

I'd say I have malaise all the time.

Full blown PEM is, for me, a complete inability to function in any meaningful way, and feeling very weak and ill. It's about lying in bed in whole body pain, with a splitting headache and hoping not to throw up, and needing to crawl to get to the bathroom.
 
Language, eh. Don't you love it? How can we standardise what we mean?

I used to have the malaise/flu that never ended until, finally, it did. Sometimes I still get it with PEM, but generally it's 'just' the whole body pain and headache that @Trish describes (plus a sore throat and a stuffy nose). Luckily not the crawling, though.

I think PEM comes in degrees of severity and a crash is towards the far end of the scale. For me, a crash is something that would put me in bed for a couple of days. I wouldn't technically be bedbound but being in bed helps to conserve energy and recover faster. But I'd consider even that slight burn I get in my throat to be PEM. It's the start of bad things to come and a warning that if I continue to be overactive, I'll be sorry!

It's understandable that PEM differs from person to person because symptoms at baseline and with exertion differ over time in a single person.
 
Maria1 said:
Doesn’t it come from medical jargon? (aside from the literal French translation which I understood from my school French to mean ‘illness’, although I’m thinking now that might be ‘malade’)

I think I have understood it to refer to a general feeling of unwellness, that feeling you get when you are ill that isn’t just the sum of specific symptoms, but something more that underlies it all and makes you feel crap.
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Illness is “maladie”, and when you’re ill you’re “malade”.

Malaise is pretty much as you describe it. A general, unspecified unwell feeling, most probably having to do with your heart. “J’ai eu un malaise “ could be I almost fainted, or my heart was hurting or something like that. It’s usually major and will draw attention if you tell your doctor you had a “ malaise”.
 
Dechi said:
Illness is “maladie”, and when you’re ill you’re “malade”.

Malaise is pretty much as you describe it. A general, unspecified unwell feeling, most probably having to do with your heart. “J’ai eu un malaise “ could be I almost fainted, or my heart was hurting or something like that. It’s usually major and will draw attention if you tell your doctor you had a “ malaise”.
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In the UK it's likely that attention would be from the men who used to wear white coats, but now apparently wear blue cardigans, if any attention was given at all.
 
I've heard it called 'post-extertional neuroimmune exhaustion' in the ICC, but that turned it into PENE, which was not so great for anyone who speaks Spanish... like calling that cute little car a Nova ('does not go', in Spanish!)
 
Trish said:
Full blown PEM is, for me, a complete inability to function in any meaningful way, and feeling very weak and ill. It's about lying in bed in whole body pain, with a splitting headache and hoping not to throw up, and needing to crawl to get to the bathroom.
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Wonko said:
That's what I would call a crash, PEM is less, still unable to function in any meaningful way, pain, nausea, vertigo, severe weakness etc., but crawling, that's a crash (IMO).
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I was thinking about this after I wrote it. I think when I was mildly effected and still able to work part time, I would have classed PEM as too unwell to go to work because of a significant increase in symptoms.

Now I'm like that all the time, so PEM is when I cease functioning as described in my quote above. So perhaps I could say I have permanent PEM, with occasional crashes!
 
Trish said:
I was thinking about this after I wrote it. I think when I was mildly effected and still able to work part time, I would have classed PEM as too unwell to go to work because of a significant increase in symptoms.
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I started off moderate and have gotten less sick over time. Still, I was home all last week, too sick to work. I've been calling it a "mini-crash" because I still have the privilege of forming complete sentences and stumbling to the loo. It's worlds away from a crash when my baseline was worse. I like these more finely-tuned definitions, @Trish @Wonko .
 
JaimeS said:
I've heard it called 'post-extertional neuroimmune exhaustion' in the ICC, but that turned it into PENE, which was not so great for anyone who speaks Spanish... like calling that cute little car a Nova ('does not go', in Spanish!)
Click to expand...

I worry that the 'neuroimmune' in there sounds like jargon for the sake of jargon, and will lead to raised eyebrows from some medical professionals if used by patients.
 
Wonko said:
Apparently it's so common as to be considered a uniform for NHS psyche people - dunno myself, as I never get involved with anymore, I'm just going off references I have seen.
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When I'd seen the references to blue cardigans I thought it was talking about physios who seem to have a different type of uniform to nursing staff. But maybe it is the unofficial uniform of the psychologists.
 
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