Myalgic Encephalomyelitis or ME or ME/CFS. Calling it “Chronic Fatigue Syndrome” is outdated and offensive because of how dismissive the name is.
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 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?
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).
