Identifying and renaming inaccurate, inappropriate or minimising words, phrases, etc. in ME/CFS

The purpose of this thread is to identify and rename words, phrases, etc. that are used to describe aspects of living with ME/CFS that are inaccurate, inappropriate, minimising, etc., and to try and find better descriptions to better communicate our reality to those around us.

The inspiration for this thread was a discussion during the making of the PEM factsheet and this thread on a blog post about what happens when our language fails to be able to describe people’s reality.

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I’ll kick things off with PEM.

When it comes to PEM, some of the more severe patients report that events like stimuli can cause PEM even though exposure to e.g. sound doesn’t require any willed or active exertion on their part. There’s also the issue of how ‘malaise’ means ‘feeling ill’ - and PEM is clearly more comprehensive than that.

Therefore, I believe that neither post-exertional nor malaise are good enough descriptions of what someone experience with PEM.

It might be that we would be better served with a more neutral description that doesn’t imply anything about the cause.

 

Deteriorative Exertion Intolerance - Doesn't make a claim about etiology or cause, but conveys that the patient is being harmed.

Flare ups make it sound very temporary, with flare ups, the likes of Brian Walitt will appear to be correct when they say:

With DEI it implies there's damage.

 

I think this will be a very interesting discussion but that we have to bear in mind that we're not in control of what symptoms are named (more's the pity). I think the best we can do is come up with language that clearly describes our experience and that we can use ourselves in encounters with people.

I don't think we can re-name 'PEM', for instance, but we can come up with a way to describe it to other people who we have to deal with.

 

What about Deteriorating Stimuli and Exertion Intolerance? Advantage; it would add the stimuli.

Edit; leave exertion in

 

The first that came to mind:

Complex (can imply a psychosocial component)
Tired
Energy envelope (implies the meaningful existence of such a thing)

 

‘Exertion intolerance’ implies that exertion is the cause.

But exertion usually refers to something active or willed. Exposure to stimuli is neither. Therefore, I don’t believe that exertion is exhaustive enough.

Because I don’t have a better alternative that encompasses both active and willed exertion, and the more ‘passive’ aspects of exposure to stimuli etc., I’m leaning towards avoiding any reference towards exertion at all. Although that might have some issues on its own?

What makes you hesitant about it?

 

But if we find better words, we are able to put them forward in advocacy. Now we don’t have the right words.

 

My uncle has severe MS. He’s the only person without ME/CFS that has understood PEM. He understood me long before I even knew what PEM was.

 

Agreed. Probably best to just avoid the word.

Another one to avoid - everyone can be tired! I currently use extreme exhaustion, mostly due to not knowing about better alternatives.

Good point!

 

What would make me hesitant is the fact that for many with ME/CFS (probably the majority) it's nearly always the trigger. It would be very hard to explain what happens after you exert yourself without using "exertion" or another word that means exertion.

It doesn't mean, or even imply, that it's the exclusive cause. It's just the most recognisable one, even for newly ill people with quite mild symptoms.

It's also the most easily understood one for people who don't have ME/CFS. Once they've grasped that, the conversation can be moved on to the other causes.

We're trying to explain quite a big concept, and it's not surprising it needs more than a single expression. To communicate it we need to embrace that—we need to fight for the extra space to use enough words, not avoid useful individual ones because they don't fully capture it.

[Edited slightly to tidy up grammar]

 

Cool thread idea. I question, are there any phrases that are wholly accurate and non-minimising. I think I’d have an easier time making a list of those. Because I think the average language used by most health authorities is constantly coding with minimising langauge and is blatantly non-severe informed.

 

I don’t think we need to change Exertion in PEM. I just thing we need to be more explicit about mentioning passive exertion (ie. cognitive load, physical and mental stress, non-exercise activity thermogenisis) can cause PEM, just like active exertion can. I don’t think there is a better word that ecompasses both active and passive exertion in english than “exertion”, even if the common conception of the word is biased towards active exertion.

 

My counter to that would be that the MS community seems to be perfectly fine having a neutral name like ‘flare’ and then explain what it means instead.

A descriptive name has a very limited amount of information that can be included in the name, so it’s bound to be reductionist and exclusive of e.g. the most severe.

So why not go with a more non-descriptive name?

 

You can call it sensory exertion, I know it's not something active or willed. Instead you could call it sensory overload like people with Autism have.

 

I remember the first time I came across this phrase and was completely baffled by it. I still am to some extent. I don't think it is obvious or intuitive.

 

Are we all behind changing boom-bust to something else? I think it’s been slowly changing to push-crash.
I think it’s been discussed a lot. Boom and bust is business language and it’s implying good times and fast living followed by destitution. It also has an air of hubris.

 

I do think it’ might belong to Schrödinger, as you don’t know for sure what is in this envelope until you open it. The energy only exists as an unknown until you access it

 

I’m not sure I like push-crash because it implies that the patient has agency over wether or not they get PEM. Many do not due to life and inadequate help.

 

Post exertional amplification of symptoms or sickness