ME/CFS Lingo
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Quick question, has anybody come up with a better word than rest. Well meaning people will say ‘I hope you can rest up’ or ask if its been a restful day. I try to explain its more like hitting a wall or crashing but find it hard to convey that lying in bed on the bad days feels anything but restful. I even use the word out of habit and with the best of intentions will probably say it to others on this forum. Just know when I say ‘hope you get a chance to rest’ I understand the anguish that can come with enforced horizontalness.
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Hopefully one day we can come up with a word that describes it @gretch. I don't think there's one in the English language yet.
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I use the term "forced bed rest" for what you're describing. It's not ideal, but I think it gets the point across. It can be forced by your body, or forced by you in order to prevent further deterioration.
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@gretch I heard a medical professional say - to reduce any activity and daily stresses in order to recover which can mean 'literally lying or sitting down' doing little to reduce energy consumption. In this state there is the opportunity for the human body to start to heal or repair itself. It is amazing how 'wording' things can make a big difference as to how one is perceived in the community.
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@donnamarie think I might co-opt that word for a while. Hoping everyone gets some recoverful days.
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@gretch that is a great idea.
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As a follow up I just want to say how grateful I am to everyone who is sharing their story on this forum. Not just for the obvious reasons about feeling more connected and less alone and shared experiences taking some of the rawness out of the yearning to be seen, heard and understood but also because your honesty and openness is helping me to upgrade my specific ME/CFS lingo as well as my language of illness in general. For context, I grew up in a house where the only response given to the question “How are you?” was “not too bad.” Which is what was said no matter what the circumstances. So huge thank you and admiration to everyone.
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What does meep stand for? I get the idea that it is a person with me but what does the second e stand for?
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That's a good question
It's a term I use, but I'm afraid I'm not up-to-speed (I may have known once, but brain draws a blank now) where it comes from. -
I've always assumed it was like 'peep' for people e.g. "Hello Peeps" but switched to ME. So like ME Peeps shortened to Meeps.
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@Daffy_Dave thanks. I thought people might say that
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@EmergeAustralia thanks, another possible explanation
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@Daffy_Dave when I think about it I don't like the term meep, it's defining you by your illness
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@iris That's a fair concern - that said, I don't try and use it as a limiting term, but it's just a handy shorthand if I have to write "people with ME/CFS" - in my head it has the same meaning. I definitely don't go around saying "I'm a MEEP" or anything like that. As best I can tell, I'm not using it in a way that extends the meaning, but if you think it does let me know and I'll try to remember not to use it in these parts
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Seconding the etymology of ME + peep! (with "peep" being short for "people" just to be clear...)
Pronouns: they/them - ME/CFS since 2017
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@Daffy_Dave I think the way you used it was fine
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@river I realise now that makes total sense
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@river Hahaha, as opposed to all those people with ME "peeping" outside of their windows (I'd never thought of the possible ambiguity before - nice thinking
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Just popping the spoons info in again under this topic so might be easier to find for those new to some of the ME/CFS terms. Great that we can develop a language to help explain the complexity of ME but does mean there are sooooo many acronyms and definitions to get our heads around.
She/her
Kabi Kabi Country -
Also finally getting around to a question @artist55 asked about the term ‘Baseline’. Haven’t come across a good graphic to explain it but here is an excerpt from the ME/CFS South Australia website:-
Baseline
It is important to identify how each symptom feels when symptoms are stable. This is called the baseline level of symptoms.
The type and intensity of symptoms at baseline become the reference point for recognising:
• a change in symptoms
• an exposure to a trigger (see PEM)
• whether or not an activity is safe
• how much rest is needed
• the onset of PEM or a relapse
Most people find that they have one or more symptoms that act as an early warning sign that all symptoms are about to get worse. These markers act as cues, indicating the need for rest to allow the body to recover to baseline.
If symptoms are constantly unstable, this may be an indication of frequent, rolling or unremitting PEM. Extended rest will be needed to enable the body to stabilise and establish a baseline.
If identifying a baseline level of symptoms seems confusing, keeping a symptom diary may be helpful.I’m hoping to add a few more excerpts from this article on pacing in the next few days. Just thought it might be easier to digest in little chunks. If you want to read it in full now here is the link. https://mecfssa.org.au/resources/pacing
