Welcome to Phoenix Rising!
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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I hate the name, but it's the name of the illness we have.
Sickofcfs...your daughter is sick? I am sorry.
There is a saying that you should explain nothing. I agree with it.
I just felt the need to tell this guy that I have CFS or fibro and I didn't go into detail; the reason I told him is that I guess I am tired of not getting into it and being anxious all the time because I am truly sick and this person doesn't know the gravity of the situation. That happens to me everytime and then they find out anyway. I feel it's better to be upfront. In my experience it is. Anyone who can't handle it...get it now. Oh and I didn't tell him I couldn't drink because I have CFS. I told him I couldn't get together right now because of it. He called me a month ago and I keep dodging the bullet and blowing him off and saying I am ill but not saying what it is that I am ill with....so, I let him know. With no explanation of what it is. I said, "I have CFS and fibromyalgia." That is it. No explaining of what that is.
College kids are different. Or, not so much. I don't care what age you are. People don't get it.
I am not my illness, but right now....my illness is too much a part of my life for me to say nothing when prompted.
Anyway, who came up with this name?
Does anyone know?
Who has a right to name a disease? Is it the CDC? NIH? Any doctor?
I guess whoever defines it, can name it?
Anyway, who came up with this name?
Does anyone know?
Who has a right to name a disease? Is it the CDC? NIH? Any doctor?
I guess whoever defines it, can name it?
We have our dear friends at the CDC to thank for the brilliantly devised name.