Probably better off with saying ME. Whenever I say Myalgic Encephalomyelitis I get a... what the what? Yup, it is a mouthful.i use me. but unfortunately cant say the full name right then when always asked what that is
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Probably better off with saying ME. Whenever I say Myalgic Encephalomyelitis I get a... what the what? Yup, it is a mouthful.i use me. but unfortunately cant say the full name right then when always asked what that is
I agree with that. When I do have to say Chronic Fatigue Syndrome I cringe. It really does make me feel ashamed. After I tell myself that it not my fault and I did nothing to deserve this illness and that it is just a name. But really it is not just a name. It is a really bad name that is insulting and does not even come close to describing this illness. I think having to say Chronic Fatigue Syndrome as being the verbal equivalent to having to wear the scarlet letter.ME.
'chronic fatigue syndrome' feels like an accusation, not a diagnosis.
I wonder how differently the illness would be perceived today if the PTB when CFS was named had decided to use the word "Exhaustion" instead of "Fatigue": CES. The word "exhaustion" is more apt, anyway, and it definitely imparts an urgency to the illness that the word "fatigue" just doesn't convey.I use M.E- often people know someone else who has it- sadly it affects many people as we know.
I think the emphasis on fatigue in CFS leads people to assume it is just how they feel when they're really tired....
What do you do when they say "What's it called?"I have a "medical condition" works for me, and if I have to explain further then I say my immune system is shot so it affects my energy levels. Whatever, I don't tell anyone I have CFS or SEID.
Well they always ask me when I try to get away with "medical condition", "immune system" etc, so then I say ME, and they look blank and ask what's it called in German, so then I have to confess to the stupid name CFS, and I get "oh, isn't that like burnout?"@TiredSam they don't ask
I avoid CFS like the plague it is. I usually go with something like Dysautonomia which, when explained, sounds like it would be enough to ruin anyone's life. Even most docs I talk to accept Dysautonomia.I have a "medical condition" works for me, and if I have to explain further then I say my immune system is shot so it affects my energy levels. Whatever, I don't tell anyone I have CFS or SEID.
Many years ago I bumped into or should I say staggered into (I could hardly walk) someone I knew from my work days. I told him I had been really ill and he asked what it was and I told him ME and then had to say CFS. He then said he had been feeling really tired lately as well and had an expression of worry on his face for himself.Well they always ask me when I try to get away with "medical condition", "immune system" etc, so then I say ME, and they look blank and ask what's it called in German, so then I have to confess to the stupid name CFS, and I get "oh, isn't that like burnout?"