Meaning of the word 'malaise' and its use in the term Post-exertional malaise (PEM)

This post has been copied and following discussion moved from this thread:
“Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

That is pretty much what malaise means in medical terminology.
It is what people with prostrating infective illness like typhoid have - very much involving joint and muscle pain.

 

Copied post

Malaise???
How about arthralgia and myalgia? Does anyone think malaise is better that these two medical terms at describing joint and muscle pain, with all the connotation baggage malaise foists upon its recipients?

Sorry, I'm not trying to pick on @Jonathan Edwards, it's just this is indicative of what I have been struggling to say. We need to get better with word choice when describing our disease. We've inherited a cesspool definition. Im not suggesting changing the definition. I'm suggesting being a little more deliberate about describing it.

I agree. So we don't create a new one. We just rework the wording with an eye to making that same definition something less like a burden and more like an aid.

We could do both. I have no doubt about modifying wording for the better. It's getting agencies to adopt it where problems will pop up. They won't want to, they will resist - and for good reason.We can be a major expense if the literature accurately reflects our disease burden.

But it shouldn't be about what benefits insurance companies and state accountants etc.

 

Arthralgia and myalgia are too specific. It isn't clear that the symptoms are coming from these structures. In polymyalgia rheumatic, for instance, the 'myalgia' is probably coming from perimysial fascia and ligament. Malaise is a more appropriate term for a more generalised sense of being unwell with widespread pain.

There is no baggage attached to malaise in medicine. It is a technical term.

 

For 15 years I have been coming across malaise in its technical setting every single day far more times than most doctors will in a month of Sundays and I can assure you it carries baggage. If you were exposed to the word before your medical journey, then I'm pretty sure it resonates with you as baggage as well, at least in some measure. You cannot walk away from that influence. It's not a function of choice. It's there. It's there for all doctors I fear.

 

The ramifications of LC will certainly put more focus on how the immune system may be abnormally sensitive to the modulatory influence of the autonomic nervous system.

We all want a better term to describe our malaise (PEM), but 'un malaise' in French medical terms does include cardiac symptoms, loss of energy and weakness. I never use either when describing my symptoms to my GP. I just say I can't walk far or stand up right for too long.

 

Yes, and similarly I never use the word "swoon" when describing my symptoms.

And yes, I suspect we've all caught ourselves word-smithing our disease to doctors, gaging their reaction if we slip into convention inadvertently. I realize it is what it is, but medicine is broken and for it to get fixed it needs to become a two-way street in the patient/clinician relationship. Starting imo with calling a spade a spade.

 

That is good to know if that is how it is being interpreted. I'm getting up things along the lines of a general feeling of unwellness.

I probably didn't clarify well enough that these were separate examples. I'd get raring sore muscles deep right through in the muscles just from driving a short period in the very same legs that could have done all sorts of activity without more than a mild 'knowing you've done something feeling'.

The just not enough rest/cumulative overdone was/is like a rheumatic (like my glands swollen pain sort of) 'everywhere' but then (apart from 'maybe' a few days where I've had a good run and a really good rest/just after a recovery period) sore, tight and aching ankles and wrists and red raw front of calves and front of ankles (to the point I can't wear 'cuffs' like socks or trousers with elastic or that brush it) that gets worse the more 'over baseline' my life has been in the previous months. Although a recent medication course for something else did reduce it while I was on that for the first time in over a decade.

Doing physio for a frozen shoulder was a bust (but felt insightful) because barring the most tiny things at home - which did mostly 'local payback' the next day but then died down - anything that was needed to make headway past a point simply left me waking up a set time later with it (and the other parts of my body) even more enraged than before ie locked body needing someone to come round with hot water bottles in order to be able to sit up/move. I'd had a steroid injection and tiny things (ie doing one arm thing every 6 hrs when you'd say do 10 repetitions of them, sliding up tiles with it under a hot shower for a number of seconds) would balance 'overall', (maybe some PEM tiredness) but any more/too much beyond and it was 'boom' locked and inflamed in various areas the next day and shoulder going backwards. Despite being on high dose ibuprofen.

I mention this because the ankles and calves and hands, wrists etc are like a low-level cumulation of this/the isolated bit was like an acute case study of that. The frozen shoulder bit is a red herring (just mentioned as most recent and gives an idea of what physio exercises were suggested and why I felt I had to try them) - where I got suggested to do 'gym stuff' in previous years the same thing occurred just I was at a different severity to begin.

 

I was taught the meaning of the word by my parents, who were both physicians.
Malaise is used in social contexts but lots of medical terms are.
I really don't know what baggage you are talking about.

 

As far as I am aware physicians that use the term use it in that way. They understand that patients feel unwell with discomfort or frank pain all over. Malaise in the context of typhoid or viral illness is not anything trivial.

The medical professionals who don't believe PWME really have bad symptoms by and large don't talk of PEM. In fact they claimed that including PEM was inventing a new disease. They talk of fatigue.

 

Hmmm. Really? How long has it been since you watched Gone With The Wind?

Medical definition of malaise: "Malaise is a general feeling of discomfort, illness, or fatigue that has no clearly identifiable cause."
This definition generally falls far short in conveying what patients pwME experience. It actually downplays - significantly! - what happens during PEM. A general feeling of discomfort?? Geez! And the no clearly identifiable cause bit renders us low-hanging fruit for any psych charlatan, or worse, allows any lazy clinician simply to walk away without ever engaging his conscience.

And who are we kidding? Physicians and researchers are people too, exposed to the same biases as laymen. Some may try to rise above those biases toward qualifiers bloated with understatement, but most don't even bother.

 

To be fair, even Leonard A. Jason has difficulty defining what is occurring during PEM. He uses 'fatigue' a lot in his definition.

I don't expect my GP to understand and have never mentioned PEM to her in 31 years. Yeah downplaying is irresponsible and harmful to patients, I agree.

 

I think an important aspect of PEM is a strange inability to function well.

I have what I would consider "mild PEM" at the moment. I tried to do some undemanding software work and I'm having difficulty completing any of the tasks I set out to do. I run out of patience and get frustrated, make mistakes, and am slow, can't formulate clear ideas. It's difficult to achieve anything when the brain isn't working well.

Physically I'm also not in good shape. Pain levels are up. Being upright is unpleasant due to fatigue. At some point I had a "feet dragging on floor due to not being lifted high enough from the floor" gait which I tend to get while fatigued.

Today's disorganization also extends to food preparation. I just ate whatever was there and neglected preparing proper meals. Then ended up grumpy later because I hadn't eaten enough and healthy enough.

 

Where does that definition come from? It is completely inappropriate and I have never heard anything like it before. Malaise is normally used when you know that the cause is likely to be an infection.

 

That seems to me to be an insult to those physicians like Jason and Nacul who are trying their best to provide a usable framework for discussing ME. If patients aren't prepared to give credit where due then they are likely to find themselves completely alone.

 

A) I'd ask that you read what I wrote;
B) I would hope we patients would be able to both give credit and criticize? I've at times been critical of most researchers and clinicians; I've sung their praises, too. I hope I'm being authentic and constructive.

I'm very interested to hear how you prefer patients to behave.

 

(Please, I am posting the following for informational purposes, not intended to be for or against anyone.)

Here is, for exemple, the definition of "malaise" according to MedlinePlus, from the National Library of Medicine (NIH):

https://medlineplus.gov/ency/article/003089.htm

Further on, examples of diseases, conditions and medications that can cause " malaise " are given. Note that 2 psychiatric conditions, depression and dysthymia, are also listed...

 

That looks like the sort of vague dumbed down definition that seems now to be very prevalent on internet information sources. Maybe everything is like that in the internet age now but I find it hard to see what better term to use. Moreover, when used as part of the specific triplet PEM there is no need to assume that it has this vague meaning. In fact it has its own specific meaning based on the experience of PWME!

For rheumatoid arthritis the equivalent 'cardinal symptom' is known as 'early morning stiffness'. That would sound pretty vague too if people thought it was something like the stiffness you get after a work out the day before.

I just think that expecting the medical profession to find magic words that have no possible negative connotations if taken out of context is unreasonable. When I first heard the term PEM it seemed to me to be a very intelligent way to point out that the symptom was not just tiredness but closer to the traditional meaning of malaise - which as far as I can see it is.

 

Isn't this to some extent an internet information source - one that some people also use to discuss information they discover?

I'd wager there are patients that expect very little from the medical profession.

Magic words?

Never asked for that. Just better words, ones not so overtly bad.

Whats that again? A general sense of illness or lack of well-being? That works for you, does it? You think it's ok for me to try to explain PEM by telling my clinician that after any sort of exertion I lack a sense of well-being? That I have a general sense of being unwell? That characterizes PEM for you?

There are many of us who get eviscerated by doctors when we expose ourselves in such a fashion. Not always to our faces, but to staff and other doctors and sometimes in our records.

 

I understand - I think/suspect that the consideration of this term has been triggered by various BPS proponents beginning to use/advertise things like post-exertion-fatigue and post-exercise-fatigue. Obvious connotations to the idea we are all just a bit 'oversensitive' to 'normal responses'.

Given many are yet to properly learn 'PEM' and so many we already try and explain to don't 'get it' (the delayed onset and what it means) it is whether there is a more specific term to communicate across the 'penny drop'.

Maybe, and I can't tell you how much it would hearten me (cry with hope things might work out less badly) to hear that in other areas things have moved forward a lot more in the understanding than I realise re: 'adoption' of the understanding of PEM and what it means in the profession - given we only know our own little bit of the world we are trapped in. So many appointments I've been to in the last year tried to jam in 'the mind controls x% of the body' speeches - I don't know whether it is worth moving on to different professionals or they were as good as they get/that is a bad sign.

 

For anyone wondering how medical dictionaries define "malaise"...

Mosby's medical dictionary: malaise [Fr, discomfort] a vague uneasy feeling of body weakness, distress, or discomfort, often marking the onset of and persisting throughout a disease

Webster's New World medical dictionary: malaise A vague feeling of discomfort, one that cannot be pinned down but is often sensed as "just not right."

Taber's Cyclopedic medical dictionary: malaise A subjective sense of discomfort, weakness, fatigue or feeling rundown that may occur alone or accompany other symptoms and illnesses

BMA's Illustrated medical dictionary: malaise A vague feeling of being unwell

Dorland's Illustrated medical dictionary: malaise a vague feeling of bodily discomfort and fatigue