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

[alktipping]

I agree with Sasha in that I don't feel particularly uncomfortable with the term 'malaise', though for me it has the physical connotations only and not the general psychological connotations that it has for some people and in the dictionary. For me PEM can involve the exacerbation of specific symptoms and/or generally feeling 'yucky', which for my personal associations of the word malaise allow it to fit fairly well.

I would see the exacerbation of symptoms as the most important factor as it can involve a range of symptoms eg impaired cognitive functioning and/or pain and/or fatigue and/or feeling ill.

There is variation in the symptoms exacerbated following exertion, over time within a single episode (eg today unfortunately being forced to go out twice immediate result was cognitive impairment and attention problems, then tiredness and sleep now headache and a blocked nose and poor balance, then tomorrow maybe pain in the limbs) and between episodes (eg on Friday my primary response was tiredness and needing lots of sleep, over 12 hours, whereas today at present my primary response seems to be feeling unwell, feeling like the onset of a head cold) (Note am dealing with potentially end stage renal failure in a cat, so lots of visits to the vet's which is why there is repeated excessive exertion.)

This in turn is set against the variation in my underlying condition, as PEM requires less 'exertion' when overal my ME is more marked. Further PEM can be cumulative, my PEM today is worse than my PEM last Friday, partly because of last week's excessive exertion.

I suspect there is also considerable variation in the symptomatology and subjective experience of PEM between different people with ME.

Given all this, finding the right word or phrase will be difficult, and of all the alternatives I have heard so far only Sasha's 'post-exertion symptom exacerbation' for me more or less fits the bill.

I am sorry to learn of the poor health of your cat and the upcoming decision you have to make . in my previous experience of taking very ill and much loved pets to vets it is one of the most upsetting off times .

 

[Kalliope]

I presume Gunderson does not have ME. I climbed and descended Galdhopiggen when I was about 10, and can assure him that "PEM" is nothing like the sensation one gets from climbing that or bigger mountains.

No, he doesn't have ME. He is an outsider and is navigating the ME-field based on published research. Unfortunately, that includes PACE and Cochrane reviews etc..
Cool that you've descended Galdhøpiggen! Would love to do that sometime

 

[James Morris-Lent]

@Forbin , I think of that same line every time I hear the term! I also find "The Trial" to be a disturbingly accurate depiction of the common doctor-MUS patient relationship.

 

[Forbin]

Perhaps the most famous use of the word "malaise" (in the US at least) never occurred.

In the summer of 1979, then President Jimmy Carter gave a national speech about meeting the challenges of the energy crisis.

Carter felt that the nation needed to overcome a "crisis of confidence" in order to address the problem:

"It is a crisis that strikes at the very heart and soul and spirit of our national will. We can see this crisis in the growing doubt about the meaning of our own lives and in the loss of a unity of purpose for our Nation."

http://www.presidency.ucsb.edu/ws/?pid=32596

He then attempted what might be considered a quick session of national CBT:

"We know the strength of America. We are strong. We can regain our unity. We can regain our confidence. We are the heirs of generations who survived threats much more powerful and awesome than those that challenge us now."

Although Cater never used the word "malaise," by the next morning The Los Angeles Times wrote that Carter had summed up "The moral malaise into which the country had descended."

It quickly became known as Carter's "malaise speech" and the term hung around his neck like an albatross until he lost re-election the next year.


I suspect that, in the US, at least, "malaise" has subsequently had a connotation not only of a "doom and gloom" that you should snap out of, but perhaps also of a presumptuous and insulting "diagnosis."


The "use" of the term was still being referenced almost 15 years later.

 

[AliceLily]

I prefer to keep malaise. Malaise envisions to me someone languishing in bed really sick with something. I was wondering last night if another language apart from English has a better description of what PEM is like but then it would mean nothing to those of us who don't understand that language.

Crash to me is more for healthy people who burn out.

I've never liked brain fog and don't like using it.

 

[Forbin]

The muscles soreness that healthy people feel the day after exercise is called "DOMS." It stands for Delayed Onset Muscle Soreness.

So, perhaps delayed PEM could be called something like "DOSA," for Delayed Onset Symptom Amplification.

 

[Alvin]

So, perhaps delayed PEM could be called something like "DOSA,"

But this is also a food item, a rather tasty one
https://en.wikipedia.org/wiki/Dosa

 

[Sasha]

It seems that malaise annoys several people. That may be because of a lay meaning of the term. In medical parlance it means the sort of symptoms that occur with immune activation as part of an infection.

That's surprising to me because when I used the term with my GP he said, 'So you feel nauseous?', which led me to think that it didn't mean what I thought doctors thought it meant.

 

[Cinders66]

Would you describe your 'crash' as a relapse? I've never used the term crash because I don't understand what that is, a relapse for me changed my previous state state to become permanently worse.

A crash for me is a really bad flare of ME where I really go down hard as opposed to more mild PEM where I can feel worse, flukey, do less for a day or two. A crash would be a more dive down in function and a “I’m out if order” state.
A relapse for me is more severe than a crash, as in its going significantly backwards to a previous level of function that might take a while to come back from. A deterioration is worse than a relapse or set back and isn’t really recognised by NHS and its where bad PEM , often repeated isn’t recoverable from. It’s how I went from mild to very severe.

 

[Skycloud]

I can be happy with 'malaise' as a term if I can be sure my doctor/s and other health professionals understand the term in it's medical usage and take the time to learn what it means in ME and what it means in my case.

As for the general public, family and friends, misunderstanding of all sorts of conditions and diseases and their consequences for the patient is fairly common. I don't expect everyone to ever understand what ME is, or what PEM is; people generally have other preoccupations than an illness they don't have. If the medical professions better understood and accepted our symptoms then the public and stubbornly ignorant family and friends might for the most part take our delayed post-exertional 'malaise' more seriously.

I understand the dissatisfaction with the word, but I think it might be misdirected, or at least I'm a little frustrated by it. I wish our community didn't have such trouble with names.

 

[Trish]

For me I think the most important first step is to sort this out from the NICE guidelines:

characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)

By giving the alternative of post exertional fatigue this weakens and confuses the definition, allowing for people who feel tired/fatigued the day after a higher than usual amount of exercise to be included. If we could get them to keep it strictly at malaise, not fatigue that would be a big improvement.

 

[Cinders66]

I know some people find the term PEM belittling to the severe distress most of us actually suffer with an exacerbation. But words are tricky. The word distress I’ve just used can be misinterpreted, the alternative some prefer PENE , is less satisfactory to me because it’s about exhaustion, the term exacerbation is tricky because in PEM we can get symptoms we don’t usually have eg night sweats, temperature control, soreness.

I think PEM terminology is far less of an issue than CFS. Listening to the radio northampton initial question,” is CF & ME always the same thing” we have far to go on fatigue false assumptions and our current name.

 

[Cinders66]

For me I think the most important first step is to sort this out from the NICE guidelines:


By giving the alternative of post exertional fatigue this weakens and confuses the definition, allowing for people who feel tired/fatigued the day after a higher than usual amount of exercise to be included. If we could get them to keep it strictly at malaise, not fatigue that would be a big improvement.

Totally agree Trish. Of course very useful for Crawley et al and really just a weakening to more like oxford criteria in uk to perpetuate the bps approach. Turning PEM into fatigue takes out the sickness, illness, pain aspect so central to PEM, conveniently.
Saying that I do think there are people with a CFS who have fatigue PEF and other symptoms who deserve recognition of having a physical disorder and research, just not lumped in with us.

 

[Cinders66]

I have no problem with the term PEM. I think it was Nick Cohen who argued that the danger with online activism today is that it focuses too heavily on changing the language around an issue rather than the (far harder) task of solving the issue itself.

I think there’s a truth in that but regarding CFS terminology I think it’s actually preventing proper respect and recognition necessary to solve the issue, so it’s not just semantics.

 

[BruceInOz]

It seems the problem is that the phrase 'post exertional malaise' gets interpreted using plain English rather than being flagged as a medical term with a medical definition as Jonathan interprets it. It's like it needs an obviously Latin name which flags that it is not to be (mis)interpreted in plain English. But 'post exertional' is already Latin and google translate renders 'post exertional malaise' in English as 'defectus de se post exertional' in Latin.

I think I'm in favour of keeping it as it is and educating all and sundry that it has a defined meaning.

 

[Cinders66]

I have no problem with the term PEM. I think it was Nick Cohen who argued that the danger with online activism today is that it focuses too heavily on changing the language around an issue rather than the (far harder) task of solving the issue itself.

I actually don’t know if I agree. I think it’s BECAUSE we aren’t making proper progress on the issues, that patients become concerned with trying to modify anything they think might get us more the respect and recognition and action we haven’t got.

 

[Mithriel]

It seems to me that it isn't the term PEM that is the problem, we could call it "the ME effect", it is the definition of the term. You will never manage to get a complex description of a medical problem into a neat phrase. Diabetics have a "hypo" which is meaningless unless you speak Latin and know it's an abbreviation, but we know it is a medical emergency if it is not treated quickly.

Interestingly, Dr Lily Chiu's recent paper found that the difference between what we get and what happens in other disease is that we get symptoms which suggest immune system involvement, such as night sweats, swollen lymph nodes, sore throats and so on. Even if they are not the only things which happen if we do too much they are the things that make us unique. This immune system involvement is called malaise in infections like flu.

I suspect that we will never find a term that the BPSers will not corrupt.

 

[Mij]

A crash for me is a really bad flare of ME where I really go down hard as opposed to more mild PEM where I can feel worse, flukey, do less for a day or two. A crash would be a more dive down in function and a “I’m out if order” state.

Is your crash from going over your energy boundary or an immune reactivation? Is your crash immediate or delayed?

I don't get mild PEM. When I am in a PEM state it very serious distressful and totally disabling. I go from being my 'normal' to I want to die.

 

[Trish]

Interestingly, Dr Lily Chiu's recent paper found that the difference between what we get and what happens in other disease is that we get symptoms which suggest immune system involvement, such as night sweats, swollen lymph nodes, sore throats and so on.

Trouble is, some of us don't get those particular symptoms during PEM - we get a whole lot of different symptoms.

 

[Mij]

I can be happy with 'malaise' as a term if I can be sure my doctor/s and other health professionals understand the term in it's medical usage and take the time to learn what it means in ME and what it means in my case.

This is the reason I don't like the term 'malaise', even in the medical sense of the word. I don't want to be categorized with everyone other illness that experiences malaise. I like amplification of symptoms because the symptoms are distinctive to M.E, including autonomic dysfunction and cognitive impairment.