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

[Willow]

Personally, I prefer the word malaise over the terms fatigue or tiredness as I think it more accurately describes what I experience as a PwME/CFS. When I hear malaise, I do not think of the classic Victorian lady fainting away, but rather what one experiences when coming down with a bad case of the flu -- your whole body slowing down, unable to do basic things, feeling ill, body aching, needing to stop all activities, needing to rest, ultimately feeling like my body is a broken-down horse down on its knees and you can hit it with all the sticks you want but it cannot move, etc. To me, that is malaise, that is ME/CFS. Calling it fatigue or tiredness just doesn't cut it.

 

[duncan]

Personally, I prefer the word malaise over the terms fatigue or tiredness as I think it more accurately describes what I experience as a PwME/CFS. When I hear malaise, I do not think of the classic Victorian lady fainting away, but rather what one experiences when coming down with a bad case of the flu -- your whole body slowing down, unable to do basic things, feeling ill, body aching, needing to stop all activities, needing to rest, ultimately feeling like my body is a broken-down horse down on its knees and you can hit it with all the sticks you want but it cannot move, etc. To me, that is malaise, that is ME/CFS. Calling it fatigue or tiredness just doesn't cut it.

This is a good description. It really does capture what some of us experience, with obviously specifics varying.

I like the description. My only problem with it is only half of it actually pertains to malaise. The other half does not, and is not conveyed to clinicians or anybody else for that matter when you say "malaise." So for you malaise means this whole paragraph, and most pwME would nod in agreement at where it ends with PEM- but that isn't malaise. We are looking from the inside out, and that is problematic.

Specifically:

When I hear malaise, I do not think of the classic Victorian lady fainting away, but rather what one experiences when coming down with a bad case of the flu -- your whole body slowing down, unable to do basic things, feeling ill, body aching, needing to stop all activities, needing to rest

This may be malaise.

ultimately feeling like my body is a broken-down horse down on its knees and you can hit it with all the sticks you want but it cannot move, etc.

This is not malaise.

You capture the experience of PEM beautifully, but only part of your narrative is relevant to malaise. That first half of the sentence may be what some clinicians think when they hear malaise (I fear it does not even rise to this), but I harbor profound doubts that the second half will even remotely flirt with their considerations.

And if their take-away is at best the first half of that beautiful sentence, who knows what culprit they will assign accountability to. It could be anything from the flu to depression to you're having a bad day. Then we're right back where we started, maybe worse.

 

[Kitty]

One of the problems I have with the medical definition is the term vague.

If "vague" means illness caused by lots of different symptoms then it might just about pass, but a lot of ME symptoms are specific: certain muscles groups that never stop hurting, migraine, nausea, swollen neck glands, sensory sensitivity.

To me, some of those dictionary definitions sound more like the very early stages of a cold or an upset stomach. Something isn't right, but you can still function at 100%.

 

[Mij]

You capture the experience of PEM beautifully, but only part of your narrative is relevant to malaise. That first half of the sentence may be what some clinicians think when they hear malaise (I fear it does not even rise to this), but I harbor profound doubts that the second half will even remotely flirt with their considerations.

And if their take-away is at best the first half of that beautiful sentence, who knows what culprit they will assign accountability to. It could be anything from the flu to depression to you're having a bad day. Then we're right back where we started, maybe worse.

What term would you suggest better describes PEM in one or two words to a physician w/o a biomarker? We could also add that over exertion amplifies all other symptoms including cognitive function that disables us to bed for days, weeks, months . . .

 

[Mij]

Telling your doctor that you have 'orthostatic intolerance' isn't going to describe how this negatively/disables your life either. I got that glazed over eyes look from my doctor when I mentioned it once years ago, I never mentioned it again. I told her I had chest discomfort when I'm upright too long. I was booked an appointment with a specialist almost immediately.

 

[duncan]

What term would you suggest better describes PEM in one or two words to a physician w/o a biomarker? We could also add that over exertion amplifies all other symptoms including cognitive function that disables us to bed for days, weeks, months

Oh I'd consider thousands of alternatives, but off the top of my head, I always liked the straightforward accuracy of post-exertional symptom exacerbation. There are many, many words or phrases that wouldn't illicit the sort of character calumny that comes with malaise.

But it's not just malaise. It's fatigue, its brain fog...The whole ME/CFS description needs to be razed. NOT its definition. The words.

I'd be happy to start with malaise. And fatigue. And brain fog. And....

Telling your doctor that you have 'orthostatic intolerance' isn't going to describe how this negatively/disables your life either. I

Neither does it carry an inherent liability. You can explain that without having to also clean up the misconceptions pregnant words leave behind.

 

[Mij]

@duncan

How many minutes do you get during your doctor visit? I only get 8-10 minutes I talk really fast before she's out the door.

 

[duncan]

Ha! Tops 20 minutes, @Mij . But I've had my same doctors for years. No one even bothers to ask me about my symptoms anymore. Usually we fill that quarter hour talking medical politics.

 

[Trish]

I haven't found a better single word or short phrase to describe PEM, but I agree malaise is not perfect.

The problems for me are:

I have malaise all the time - feeling ill, aching/painful muscles, drained exhausted feeling, sometimes headache, sore throat, nausea, IBS symptoms OI, physical and cognitive fatiguablity, etc. All the usual stuff we know so well.
I also have severely limited function all the time.

So I need something that indicates that PEM is different.
All my symptoms much worse,
Extra symptoms that I don't have all the time, like dizziness, vomiting, headache, loss of appetite, bedbound, unable to think, concentrate or talk coherently ...
and much more severely limited function.

PESE, post exertional symptom exacerbation, is being used more often, including as an alternative in the new NICE guidelines.
I don't particularly like it, because it's too easily interpreted, in the context of the name 'Chronic fatigue syndrome' to mean post exertional increase in fatigue.

I think we have to accept that no term will be perfect. I would like one that combines:
- disabling and unpleasant symptoms that are ever present becoming significantly worse
- additional symptoms
- significantly reduced function
- usually delayed onset, and duration more, and sometimes much more, than 24 hours

I think that's why many of us use the term 'crash'. It seems to convey, though in lay rather than medical terms, something significantly awful and disabling.

 

[Mij]

I agree @Trish

I don't have many symptoms when I pace. I get vertigo and malaise when my immune system is acting up which is transient.

My disabling symptoms are from autonomic distress. When I'm in PEM it feels completely different from day to day M.E- completely different.

 

[duncan]

Exertion-induced sequelae? EIS?

I am particularly fond of EIS because it's a full-circle acronym in the US. In the US, EIS stands for Epidemic Intelligence Service, the part of the CDC that investigates new or unusual disease outbreaks. It was the EIS that looked into Lake Tahoe and supposedly helped coin CFS. It was the EIS that first looked into the peculiar spate of juvenile arthritis in Lyme CT, and who helped launch the Lyme wars.

So I am fond of the karmic value here.

But no serious allegiance, other than it eliminates altogether the need for any qualifier like malaise. It's pretty neutral.

 

[Trish]

Exertion-induced sequelae? EIS?

I looked up sequelae

Sequela: A pathological condition resulting from a prior disease, injury, or attack. As for example, a sequela of polio. Verbatim from the Latin "sequela" (meaning sequel).

So we could say ME/CFS is a sequela of an infection after the acute infection has resolved.
I don't think it works for PEM, because it is a recurring part of an ongoing condition.

 

[duncan]

I think that's why many of us use the term 'crash'. It seems to convey, though in lay rather than medical terms, something significantly awful and disabling.

I too use "crash" to convey PEM to anyone not knowledgeable of ME/CFS, ie, pretty much everyone i know who I'd be willing to discuss ME/CFS. But crash is hard because it's so cross-elastic, it's used for so many conditions.

My bad about the sequelae thing. In my head it was synonymous with symptoms. Could just say symptomS, but eh. This is not a hard fix. None of these wordings is. The doing isn't difficult. Getting it prioritized and accepted would be. There would be fierce resistance from formidable lobbies.

 

[rvallee]

One of the problems I have with the medical definition is the term vague.

If "vague" means illness caused by lots of different symptoms then it might just about pass, but a lot of ME symptoms are specific: certain muscles groups that never stop hurting, migraine, nausea, swollen neck glands, sensory sensitivity.

To me, some of those dictionary definitions sound more like the very early stages of a cold or an upset stomach. Something isn't right, but you can still function at 100%.

In this context, vague explicitly means common, as in too common to be helpful in differential diagnosis. So it could be useful to adopt that language, because that's what it means. It's from the perspective of how useful it is to the clinician to diagnose, it's not a qualifier on the symptoms themselves. It would be OK if it weren't weaponized, but language always is so any terminology has to take that into account, just as much as naming a kid has to take into account how some names can be turned into a lifetime of jeers and mockery, easy to avoid.

One of the many ways a small change in language could lead to significant change, changing from a supply-side perspective, what it means to a clinician, to a patient perspective, what it means for the patient and applied to their context, not the context of healthcare systems.

A shift in terminology this way would be a useful project. I just don't know how this could be adopted without massive systemic reforms to how healthcare works.

 

[JemPD]

To be honest if Jonathan says that for UK Docs malaise means what he says it does, then i'm fine with that.

I know its got connotations of vague discomfort and of victorian ladies, but we dont stop using the terms migraine or depression, or indeed 'flu' just because the general populous often use the terms wrongly and to describe trivial sadness, a bit of a headache, and the sniffles.

I think it's the best we've got, for now. I think it just needs to be qualified slightly whenever it's said (appropriate to the patient and person they're talking to), unless we already know the person understands what it means.

Personally, I prefer the word malaise over the terms fatigue or tiredness as I think it more accurately describes what I experience as a PwME/CFS. When I hear malaise, I do not think of the classic Victorian lady fainting away, but rather what one experiences when coming down with a bad case of the flu -- your whole body slowing down, unable to do basic things, feeling ill, body aching, needing to stop all activities, needing to rest, ultimately feeling like my body is a broken-down horse down on its knees and you can hit it with all the sticks you want but it cannot move, etc. To me, that is malaise, that is ME/CFS. Calling it fatigue or tiredness just doesn't cut it.

This, exactly this.

 

[Jonathan Edwards]

One of the problems I have with the medical definition is the term vague.

I think medical dictionary definitions need to be distinguished from how medics actually use terms professionally.

Medical dictionaries are probably mostly intended for lay people. As far as I know doctors never use them.

The definitions are probably coloured by a desire to be widely understood and also may be things like not being frightening unnecessarily.

 

[John Mac]

My reaction to

Personally, I prefer the word malaise over the terms fatigue or tiredness as I think it more accurately describes what I experience as a PwME/CFS. When I hear malaise, I do not think of the classic Victorian lady fainting away, but rather what one experiences when coming down with a bad case of the flu -- your whole body slowing down, unable to do basic things, feeling ill, body aching, needing to stop all activities, needing to rest, ultimately feeling like my body is a broken-down horse down on its knees and you can hit it with all the sticks you want but it cannot move, etc. To me, that is malaise, that is ME/CFS. Calling it fatigue or tiredness just doesn't cut it.

This is a very accurate description of how I am after physically overdoing things.
I can't tell the difference between the flu and PEM.

 

[Jonathan Edwards]

Looking at Webster's Medical Dictionary on Fatigue:

1: weariness or exhaustion from labor, exertion, or stress
2: the temporary loss of power to respond induced in a sensory receptor or motor end organ by continued stimulation

So that is not the professional meaning. The professional isn't bothered with 1 - they assume that the patient is likely to recognise it as normal and not consult a doctor about it. So fatigue is used to mean weariness or exhaustion (or whatever) out of proportion to normal causes. So rheumatoid and lupus include fatigue as a major symptom.

2 is a standard technical usage but not in the clinic.

 

[bobbler]

I haven't found a better single word or short phrase to describe PEM, but I agree malaise is not perfect.

The problems for me are:

I have malaise all the time - feeling ill, aching/painful muscles, drained exhausted feeling, sometimes headache, sore throat, nausea, IBS symptoms OI, physical and cognitive fatiguablity, etc. All the usual stuff we know so well.
I also have severely limited function all the time.

So I need something that indicates that PEM is different.
All my symptoms much worse,
Extra symptoms that I don't have all the time, like dizziness, vomiting, headache, loss of appetite, bedbound, unable to think, concentrate or talk coherently ...
and much more severely limited function.

PESE, post exertional symptom exacerbation, is being used more often, including as an alternative in the new NICE guidelines.
I don't particularly like it, because it's too easily interpreted, in the context of the name 'Chronic fatigue syndrome' to mean post exertional increase in fatigue.

I think we have to accept that no term will be perfect. I would like one that combines:
- disabling and unpleasant symptoms that are ever present becoming significantly worse
- additional symptoms
- significantly reduced function
- usually delayed onset, and duration more, and sometimes much more, than 24 hours

I think that's why many of us use the term 'crash'. It seems to convey, though in lay rather than medical terms, something significantly awful and disabling.

That's the one 'crash'.

And the one that really gets on my nerves (distributed by Crawley I think) is 'flare' - partly because she seems to encourage using it for 'relapse' (which is permanently/long term lowered ability) and melds it with 'crash' (which is 'out'), which is the really most worrisome thing anyone could do. It's combining the cause with the outcome. Or at least just washing away any of the basic detail that makes the illness understood. People already want to just wave their hand and not have to 'get it' and pretend to half-listen we don't need her encouragement.

 

[DigitalDrifter]

I always liked the straightforward accuracy of post-exertional symptom exacerbation.

I think there should be a term for long term pay back, I suggest LTSE - Long Term Symptom Exacerbation. I've lost count of how many times I've permanently worsened my condition from exerting myself and the term PEM doesn't cut it.

but we dont stop using the terms migraine or depression

I think we should stop using the term depression as it is currently practiced, being used as a waste basket diagnosis for unexplained physical symptoms (See: https://www.s4me.info/threads/how-o...sed-as-depression-changed-thread-title.22366/ ).