Solve ME/CFS Initiative - Editorial: PEM. It's time to Retire the Term

https://twitter.com/user/status/1023604036988297216


PEM: It's Time to Retire the Term by Pete Hanauer
It is long past time to retire the term PEM and replace it with somethingthat accurately reflects what happens to ME/CFS patients after physical or mental exertion and that respects their dignity. We suggest the term Post Exertional Disability, or PED. When patients must sit down or lie down after the slightest exertion, or are confined to bed or home, because they lack the energy to perform even routine tasks, they are, in a very real sense, disabled.

My comment:
I am sure PEM could be updated, but it's not good to keep swapping terms. It just creates confusion. Perhaps it is better to wait a bit longer until the term is not only a description of symptoms, but also a description based on biomedical research of what is going on?

PEM, PENE, PED all underline the same thing, deterioration after exertion. My problem with this is that the term suggest we're fine as long as we don't exert ourselves, and that's not accurate.

What are your thoughts?

 

Retire CFS first and by then we might already have a treatment...

 

I agree that 'malaise' isn't a great term because no one understands what it means, but 'disability' isn't a symptom - it's vague and nonspecific.

Also, I'm already disabled without PEM.

'Post-exertion symptom complex' or 'post-exertion symptom exacerbation', maybe, but I'm not sure that renaming this symptom is where our efforts ought to go.

I couldn't read the article, BTW - the connection timed out.

 

It is an interesting remark. PEM is sort of so incorporated, been the argument confronting BPS-stuff, that one actually can forget how it can be understood. PEM is for many reasons inaccurate. The “malaise” bit has always felt annoying, because it is a term that in no way is near describing the actual costs. More describing would be to change it with “crash” (PEC), but then again, a new imprecise term. But in theory rather “crash” than trying to fit into a medical term like “malaise” which is ridiculous in terms of ME.

The important point is that as long as one doesn’t exert oneself, the patient is fine. Yes, I do think that is a widespread misinterpretation that is very troublesome. Nothing could be farther from truth. You can’t really catch the reality of ME in a singular word. If using PEM today, one will have to describe what exertion is for a ME-patient, that it is about every single effort a healthy person never thinks of and takes for granted. Could be difficult enough for both, but if the recipient catches it, you could hope for understanding that ME is a sort of permanent crisis.

Maybe the only letter in PEM to rebuild something on for the future is the “E”.. Not sure of that either. Anyway, think it is an important remark and reminder that we do lack a proper language of describing the disease.

 

I don’t like “crash” except for the worst instances of PEM/whatever. There are lots of instances of PEM/whatever that I wouldn’t call a crash.

PEM may not be a perfect term but I’ll probably still use it now and again until there are widely accepted better terms.

 

Indeed, well put. I don't like the disability because it suggests this is an intermittent disability, for those very mild it might be but anyone moderate or worse can't work and can't do what a normal person does so intermittent disability is incorrect.

 

Jane Colby suggests post-exertional deterioration.

An alternative would be 'post-exertional relapse', since 'relapse' is generally understood to be serious.

 

This thread includes data on survey results on people's preferences:
https://www.s4me.info/threads/patient-perceptions-of-post-exertional-malaise-2018-jason-et-al.5130

 

Though thinking about it, other illnesses don't have such crashes so maybe it is useful as sometimes people with the illness can have such crashes. I just wouldn't use it in every instance.

 

Professor Gundersen has participated in the ME-debate for a while. He is a biologist and even this expert on muscles confuse PEM with just lactic acid after exertion and says he experience the same if he walks down a tall mountain.

This is from a twitter debate about Deconstructing post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome (Chu et al).
The tweet says: Yes actually, if I walk down Galdhøpiggen I experience what you call PEM (and I am a muscle physiologist). But I don't have access to the whole text. As far as I understand they've only registered experiences.
https://twitter.com/user/status/1010493145497456641


I like the word flare/flare-up. English is not my first language, but as far as I understand it suggests there are already existing symptoms that exacerbates with exertion.

And I agree with @Dolphin about "crash". I use it only when it is exceptionally bad, and for me it implies something far worse than "PEM". But I see patients use the words crash and PEM about the same experience, so the usage of the words seems to differ.

I am really struggling trying to explain what ME entails. I lack the words.
That's why I am so happy for ME-documentaries, that can show what this symptom exacerbation is all about.

 

I see your point and agree that there is time that not qualify like a crash. I also use PEM and probably still will. When mentioning PEC, it is as stated, just from a theoretical view. My point with PEC is that “malaise” is just plain wrong. PEM is not “feeling a little ill”, it is just the opposite. It is very distinct and it is not a “feeling”.

 

I personally have found the term PEM very helpful. It emphasised to me that PWME after exertion feel ill rather than just tired. Malaise means feeling really lousy, so lousy that you cannot even consider normal activities.

I wonder if the search for a better term is confusing objectives.
As I see it we want a technical term for symptom pattern typical of ME. Other examples in medicine would be angina for coronary insufficiency, syncope for acutely low blood pressure, colic for pain due to internal organ spasm, teichopsia for the flashing lights of migraine.

Doctors do not expect patients to come in to clinic saying they have just had an attack of angina or teichopsia. They expect them to give an everyday account of what it felt like and by asking clarifying questions the doctor concludes that it was angina, or dyspepsia, or pleuritic pain or whatever.

There is an advantage in these terms being slightly quaint and obscure, because that emphasises the need to treat them as terms of art or technical terms, rather than as ordinary talk. It really does not matter a jot what PEM is called as long as it has a name and doctors learn to recognise it by listening carefully to lots of other words patients will provide them with.

I think it would be less good to use a term that implied a mechanism, since we do not understand the mechanism. Angina remains angina and that is good because doctors learn the typical story and remain open minded about exactly how it comes about. We still do not know exactly what the link between myocardial ischaemia and that sort of pain is.

 

I haven't had a crash in years, I am however in an almost constant state of PEM, of varying intensities.

If I am at all functional it's not a crash.

An illustration; A couple of years ago my sister and her family came down to see me. Because my flat is small and she has 3 young kids we meet at a local hotel with a park, to keep the kids occupied. The day involves walking several hundred meters and a couple of meals. It was decided, on this occasion, to eat at a local pizza express in the evening (apparently a tradition for one of the kids birthdays). Despite, or probably because of, having significant amounts of opiate based painkillers, needed to be able to function at that level for that length of time, I managed to severely damage myself, to the effect that the next day I couldn't get up without severe pain, couldn't stay up and even lying down was quite painful. It took 3 months to get back to baseline, with the first month being really quite bad. It's difficult to recover from that position whilst living alone. On top of this PEM, exacerbated by the fact that my body simply didn't work and even with opiates I was getting flare ups simply due to the pain and over stressing other things in trying to minimise it.

This wasn't a crash, this was simply PEM with overstressed (past the point of failure) muscles feeding on itself. I was still broadly speaking functional, functional enough to survive anyway, a crash is when I am not functional enough to survive sustainably independently.

 

I agree that switching terminology without significant advocacy benefits would tend to be detrimental at this time, and actually diverts attention form much more important things, like getting PEM recognised as an important diagnostic criterion. My corollary to that would be if doing the former helped achieve the latter.

 

Me too. What word would you use for "flare/flare up" in Norwegian? I sometimes use the word "skov" in Swedish, not for regular PEM but for long periods of being much worse than usual/"below baseline". ("Skov" is a common word often used when talking about for example MS and RA. Doctors use it too.)

Me too, I use it the same way.

 

Is anyone else bothered by " He worked there for 16 years, analyzing thousands of tobacco control laws for a national database, until his chronic fatigue forced him to retire last summer."

 

I usually just say it in English. Sometimes I say "oppblomstring av symptomer" (flourishing (?)/mushrooming (?) of symptoms).

Never heard of "skov". The dictionary suggests "tilbakefall" (relapse) as translation, but I have a feeling that's not entirely accurate?

Edit to add:
This was actually an interesting question, @mango
What words do people use in their own languages to describe PEM? Might be an idea for a thread..

 

"Symptomen blommar ut/upp" would work in Swedish too

Yes, "relapse" is maybe the best equvalent in English?

https://sv.wikipedia.org/wiki/Skov

It is often described as a period of time when one or more existing symptom(s) gets worse and/or new symptoms arise, and then -- often, but not always -- the symptoms disappear or improve after a while. In MS they often talk about it lasting for at least 1-2 days, often weeks or more.

The Swedish equivalent for PEM -- used by both ME experts and pwme -- is "ansträngningsutlöst symptomförvärring" eller "ansträngningsutlöst försämring". (In English it would be something like "exertion-triggered symptom exacerbation" or "exertion-triggered worsening"?). But PEM is very common too.

 

I like the term Mark VanNess uses, "amplification of symptoms". Malaise means discomfort and I use this term (when speaking French) when watching something on t.v that I shouldn't be watching