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

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.

 

Is what is happening here that we are looking for a consensus on an accurate linguistic description of what is happening in a single short phrase, which may ultimately prove to be impossible given the variation in associations of individual words in different people's personal vocabulary or idiolect?

This is effectively confounding accurate description of the phenomenon (which will likely require a longer exposition) with achieving consensus on the ME jargon term for labelling that phenomenon, or as Jonathan Edwards said a 'technical term'. Once that consensus is achieved the actual words used are less relevant, as long as they do not take the lay audience down a false track, as with the unfortunate phrase CFS.

 

I didn't crash for 20 years and even though I did crash for about 12 years after that I don't crash anymore. The crash is something more severe and and i think it will someday be its own symtom that helps define the severity of the disease.

 

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.

 

I think this is the most correct definition. I did crash for about 12 years and had PEM or PERelapse for about 20 years before that. I don't crash anymore and I am back to PEM/R.

 

The crash was much more severe, that is for sure. I worked for 20 years with ME/CFS and then when I began crashing I eventually became disabled. With enough rest I was able to get back to PEM/PERelapse but still disabled as I believe once you begin crashing you are causing injury to and whatever drives the disease becomes worse.

But, until we get more research I think sticking with PEM would be best. I think it is something that researchers must think about and define more accurately.

 

I think of a crash as what happens on an ER table, a patient begins to crash. The crash can subside but then the patient can be driven into the condition that brought them to the ER even further and the crash can injure the patient in other ways; the heart, brain, etc.

 

I think we go into the disease further but your experience explains what you are saying, a constant state of PEM.

 

Useful enough. However exertion can also bring on symptoms one wasn’t dealing with before the exertion.

 

Good point. This actually may be a more important issue than the word malaise, however annoying that word is and it is annoying. But arguably the bigger problem is the confusion caused by the word exertional. Why? Because for our human brains prone to taking (faulty) shortcuts, exertional is just too close to the terms post-exertional fatigue and exercise/exertion intolerance which are much more familiar to the general (healthy) population, including doctors and researchers, some of whom should know better but don't. The inevitable result is that all too many people confuse post-exertional malaise, post-exertional fatigue and exercise/exertion intolerance. The worst is that they really think they know what ME-PEM is when actually they're thinking of one of the other two, so they're not even aware of the potential for miscommunication, misunderstanding and resulting muddled research.

Only, exertion is such a key concept in ME and PEM that after arguing at length against the word exertion, the best descriptive alternative I can come up with for my own PEM, apart from being much too long to ever catch on, includes the very word: Exertion-triggered symptom exacerbation and immune activation.

Thesaurus to the rescue. Or not. No entries for 'exertional'. For 'exertion' there are: activity, effort, exercise, strain,... nothing too useful... maybe 'effort'? Effort-induced symptom exacerbation and immune activation? Hmm, needs some work I think....

But more important than the name is a proper and widely accepted definition of what PEM - or whatever you want to call it - really is, and also what it is not (just fatigue or just lactic acid for example).

 

I am intrigued by the difficulties people see with the PEM term.

For me PEM is a technical term designed to help doctors and patients identify and understand what makes the clinical picture of ME characteristic. Terms like this are not intended to reflect impact of symptoms or degree of disability - that is assessed separately.

As I understand it the post-exertional bit is designed as shorthand to specifically identify late onset of symptoms after exertion. Everyone may feel terrible immediately after exertion but PEM is supposed to distinguish something that comes on atypically late.

There may of course also be symptoms coming on earlier in relation to exertion in ME but because they are not of particular diagnostic specificity they are not what the term is intended to mean. And the same symptoms may be present more or less all the time for some people with ME but the term is not designed to capture a type of symptom so much as its time relation.

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. In ME there is no clear evidence of immune activation as such but people say that it feels like that. So malaise seems apt to me. It also flags up that the late symptoms are not fatigue, or even exhaustion, in the usual sense, which need not be in any sense unpleasant.

 

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.

 

Just a thought, could the real point of this discussion be to bring ME/CFS up for discourse hence raising its profile?

 

I'll pile on for the side in defense of PEM. Malaise is okay with me.

It doesn't do justice to what one feels with severe ME but there are no good words for expressing that anyway in my experience. So any semantic change will yield at best a marginal increase in fidelity of expression.

PEM seems to be doing the job as a moniker for the only major specific, distinguishing 'symptom' of ME/CFS. This is really helpful. It really doesn't seem to carry any undesirable connotations. I don't see anything to be gained by changing it.

Maybe I'm prickly, but this strikes me as pandering. I resent the implication that I would indulge in being offended, and somehow allow myself to be deprived of dignity, by such a trivial semantic imprecision. It's the disease itself that actually sucks, and lack of support for sufferers who need it. Of course the words can matter insofar as they lead to better understanding of the disease and better social policy but PEM seems only helpful here.

 

I don't have an issue with the medical usage of "malaise," but its lay use can be associated with "ennui," a feeling of weariness and dissatisfaction, a lack of initiative and a possible precursor to depression.

I assume we can rely on physicians to know the difference, but psychologists...

 

Many thanks. That had completely passed me by.

 

Also, one last thing. If we change PEM now, how do we get EVERYONE IN THE WORLD to adopt it especially without the bio evidence we need. We have some evidence, but it isn't enough.

The government healthcare system, insurance companies, criteria for the disease(s), the medical practice in general, the patients, the researchers, the media, EVERYONE! Not to mention, the civil case just recently won by Brian Vastag that turned on the description of PEM, with the judge scolding the Prudential company's expert for not being educated enough on this hallmark symptom of the disease.

 

+1

This is why i said earlier we should get rid of the CFS and it would take forever, that would accomplish a lot more then attempting to redefine PEM.
PEM is good enough as is, not worth the energy to fight

 

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.

 

This seems relevant:

https://en.wikipedia.org/wiki/Law_of_triviality