It's not malaise!!!

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.

 

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).

 

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.

 

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”.

 

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.

 

@Wonko why blue cardigans ? Inside joke ?

 

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.

 

You will have to ask JE.

 

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!)

 

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 .

 

I call it being fried like a chicken, though i don't think that qualifies as medical grade terminology

 

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.

 

@Esther12 this is true. I was once told by an immunologist to stay off the internet when I used that term.