- cross-posted to:
- health@lemmy.world
- cross-posted to:
- health@lemmy.world
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Myalgic Encephalomyelitis or ME or ME/CFS. Calling it “Chronic Fatigue Syndrome” is outdated and offensive because of how dismissive the name is.
When you come up with a new name in English, I’ll start using it. Until then, chronic fatigue I can remember.
Euphemism treadmill. It is not offensive to me.
Your experience is not universal. My experience is not universal. It’s not a euphemism to try to give a more accurate name to something. We can agree or disagree over whether or not the new name is a good one or whether the old name is.
It’s offensive to at least a significant proportion of us, speaking anecdotally. My main problem is not fatigue, so the name is a poor one for me.
I’m sorry you have to deal with such a burden. Best of luck, medicine is advancing fast, perhaps hope will turn into reality some day.
Thank you. I’m not as bad these days because I eventually figured out that pushing myself is not a good idea.
Long Covid has been a real boon for research in this area, unfortunate though that may be. I’m looking forward to seeing more studies in the future.
It is to me because I still have to explain to my doctors that I’m not sleepy.
Aren’t both terms criticized? There is no inflammation (proven) so the term -itis is objectively wrong.
CFS can be dismissive but at least describes the symptoms somewhat accurately from everything I’ve read.
Though I’m not affected by the disease so my authority on this subject is zero.
The new genetic findings actually support a biological basis regardless of what we call it - researchers found differences in genes related to immune function and energy metabolism, which finally gives us some concrete evidence beyond just symptoms to study whats actually happening in these patients bodies.
The problem with the name is the focus on fatigue. Yes, fatigue is a huge part of it, but there are many more symptoms, some of which can be as debilitating or more debilitating than the fatigue.
For example, many people with ME/CFS experience POTS and other autonomic dysfunction.
Why is that offensive?
Most people hear “Chronic Fatigue Syndrome” and think (and, worse, even say out loud) something along the lines of “everybody is tired” because they don’t know that what they think of as fatigue is not anywhere in the realm of what patients experience.
Also, for decades, even doctors had that same misunderstanding and dismissed it as being not real, psychological, etc. Unfortunately, many or possibly even most doctors still treat it that way.
The name is dismissive. It does not do justice to the variety and severity of symptoms. There is far more than just fatigue involved.
It evokes images of someone being always tired, someone looking like they’re lazy. But it’s so much worse. Any exertion (physical, mental or emotional) that is too much can lead to severe pain and flu-like symptoms and a reduction in what is “too much”. On top of being tired and weak, both in muscles and mind.
Soo many doctors don’t listen and think I’m sleepy all the time when sleepiness is something entirely different.
And unfortunately, it seems those kinds of typical doctors are simply following their training, inclining them to believe they’re dealing with the issue responsibly, generally spurring them to look at other causes.
Yep. And those classically trained doctors will often still try to treat it with graded exercise therapy (basically, work out a little bit and try to gradually increase how much you do so), which has been proven by studies to worsen symptoms in both the short and long-term for people with ME.
Oh god, yeah.
One of the worst things ever was being ultimately convinced by my friends & family that I was ‘just a bit lazy and just a bit crazy’ and all that… convinced to redouble my efforts to ‘break on through to the other side.’ Which I sincerely tried, with every bit of my being.Holy hell, and I would sometimes subsequently slip in to *severe*-mode for a while, which was absolute terrifying. Like, I could barely even make my way to the bathroom to attend to my duties, and all that.
So I learned that, sadly, I could never trust other people to actually comprehend what I was going through. That I was all alone, completely, and somehow I would have to work things out and survive, with egg on my face over-and-over again.
@Björn Tantau@swg-empire.de
I’m so sorry you were pressured like that.
I didn’t have as much external pressure as you did, but I fell into a similar trap. I would push myself, because that’s the person I always was, and then I would crash and get so much worse. I remember a time when I couldn’t move basically at all from how badly I had overexerted myself, and I just asked my partner to stick a saltine on the pillow in front of my face so I could try to get to it at some point (saltines will melt in your mouth on their own even without chewing).
Wow… I don’t know what to say about this @#*!$ disease, but at least we have each other to tell our tales, no?
