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

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 .

 

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

 

@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.

 

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:

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

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.

 

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.

 

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.

 

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

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.