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

Thanks for starting this thread, I think it’s very useful to hash out.

I’ve only been able to explain to friends and family by reframing what counts as ‘exertion.’

I had to redefine it as “anything that requires more than resting-level use of any part of the body” and then point out how people with more energy will inevitably ignore 90% of the “exertion” that their body does.

I struggled to find another word beyond exertion to explain this concept that wasn’t also trivializing. “Use deficit” or “taxing-ness” didn’t really cut it outside of my trusted friend group.
 
jnmaciuch said:
Thanks for starting this thread, I think it’s very useful to hash out.

I’ve only been able to explain to friends and family by reframing what counts as ‘exertion.’

I had to redefine it as “anything that requires more than resting-level use of any part of the body” and then point out how people with more energy will inevitably ignore 90% of the “exertion” that their body does.

I struggled to find another word beyond exertion to explain this concept that wasn’t also trivializing. “Use deficit” or “taxing-ness” didn’t really cut it outside of my trusted friend group.
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If I’m not lying down in silence, I’m exerting.
 
jnmaciuch said:
Thanks for starting this thread, I think it’s very useful to hash out.

I’ve only been able to explain to friends and family by reframing what counts as ‘exertion.’
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I’ve tried to say ‘everything can cause PEM’, but I often get questions about if X or Y can do it. Saying ‘yes, that’s what everything means’ wasn’t well received, although it probably had a bit of sass!

Everything is a difficult concept to wrap your head around. Most people think it only contains the things they are aware of.
MrMagoo said:
If I’m not lying down in silence, I’m exerting.
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And in the dark, in a comfortable but supportive bed, without smells, appropriate clothing, the right temperature, and so on.
 
It’s not “enough” of an explanation but it’s a start if you’re discussing with a generic non-ME type who thinks you can “just try” a bit of x y z. How much of their day can they achieve spending most of it lying down in silence? They take for granted being sat up or standing, let alone seeing, hearing, thinking etc.
I feel like we need an unethical experiment device, which delivers a tiny electric shock each time something is added.

Sit up - pulse shock starts on left leg
Stand up - same on right leg
Walk - same on left arm
Noise - right arm
Lifting items - tummy shock
Radio on - ear shock


When they are up to at least 4 simultaneous pulsing shocks, then they have to make a coffee, get dressed and do 30 mins of housework during which ear piercing screams will be played. The shocks might pulse less frequently after they lie down.
 
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I have always thought crash was more useful than PEM, but that is not to say they cover the same thing exactly.

It may be useful for patients chatting to have terms of their own but we need to remember that terms like PEM are primarily there for doctors to use in picking out patterns that help them make a diagnosis. The patterns that help diagnosis do not necessarily reflect what is important to patients - they are not intended to and rarely do so in fact. PEM is a term of art and the words need not be accurate descriptors. Systemic lupus (wolf all over) is not an accurate description of anything.

It is always more helpful for doctors if patients do not have a preformed terminology. It is much more helpful if they describe symptoms in their own unique words. The doctor can then judge that this fits the idea of PEM or not. And it doesn't even help if some other doctor has told the patient they have PEM because other doctors are often idiots!
 
Jonathan Edwards said:
PEM is a term of art and the words need not be accurate descriptors.
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I understand that the name doesn’t matter too much when it comes to the diagnostic process, but there’s an case for that the name of one or the most important features of an illness matters to the patients.

And maybe even more importantly during interactions with the people around them and healthcare workers that are there to help after the diagnosis.
 
I always go on about this, but I thing the fatigue/tired/pacing “do 50% less” energy envelope type of language makes it easy for a non-ME person to start from their own viewpoint. They imagine themselves as tired/doing pacing etc. They need to start from a point of pain and inability, not “what I do after a bad nights sleep because someone was having a noisy party”

People don’t look at someone with deafness and think “well you could just try harder to listen, sometimes I get a blocked ear after swimming so I know how it is for you”
 
Utsikt said:
And maybe even more importantly during interactions with the people around them and healthcare workers that are there to help after the diagnosis.
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Maybe those interactions should use other words rather than words that have been designed by physicians for specific diagnostic purposes?

As a physician I nearly always found it unhelpful when patients used these terms of art because it always raises the worry that they use them to mean some half-baked idea in the head of another physician. We don't know much about PEM - hardly anything at all. So I am not sure what is would convey to people around. It might be better to call it the gurdles or that flooping you get on a bad day, having explained to the people around what that is like.
 
Jonathan Edwards said:
Maybe those interactions should use other words rather than words that have been designed by physicians for specific diagnostic purposes?
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I think that’s a good idea!
Jonathan Edwards said:
As a physician I nearly always found it unhelpful when patients used these terms of art because it always raises the worry that they use them to mean some half-baked idea in the head of another physician.
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I wouldn’t assume the GP have heard about the terms at all. Not saying that you do for ME/CFS-related terms.

Mine had not, and I spent two years exercising because of it. The first 18 months without mentioning PEM at all, only that it felt like living with a credit card from hell that gave me a delayed 10-20 symptoms for days after doing anything. Had to try and educate her afterwards, it was no well received, but that’s kind of understandable even though I don’t agree with it..
 
Sorry I am struggling to cope with following whole threads at present so not commenting in sequence, but for me PEM, flare and crash describe different though potentially overlapping things.

It is possible to have a flare in the underlying ME/CFS without an associated or triggering PEM episode. Similarly with a crash.
 
Utsikt said:
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.
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:heart:
 
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