Some have called it “profound”, some have called it “extremely severe”, but none of those terms have any official recognition even by most...
Thank you. This is useful.
Wow. Thanks man. I really appreciate you saying that . And ditto!
I have used resources. But none of those pamphlets really manage to describe my severity accurately. Like my inability to tolerate sound at all,...
I’m so sorry you went through that. My caregiver situation is fortunately far better and more privileged than what you went theough. The problem...
I think another part of the “outrage” for me is that my caregiver still hasn’t fully given up on BPS beliefs (I’d say they are maybe 70%...
This gnaws at me all the time. I relate with this so much.
So like overstating brain inflammation or T cell abnormalities or stuff like that?
As far as I understand, here most specialists even if they’ve never heard of it before, has their own opinion on “treatment” once I bring ME/CFS...
Where I live, it’s more that you’d be sent to a specialist to get properly evaluated. And in most cases, once you have a diagnosis, you’d be sent...
@Creekside ?
Thanks everyone for your input. I’m going to give myself time to let your useful messages sink in.
It does make me feel validated seeing evidence of wrongdoing and just how scientifically flimsy their arguments are. And as Trish said, seeing...
I guess. I mostly see it on this forum. It’s just so illuminating to see the instiutional biases and helps me make sense of the world and I don’t...
How do people manage to not let outrageous things impact your cognitive energy too much, or bother you too much. Often reading something...
Energy permitting, could you elaborate? I’m wondering if this might be worth sending to my grandma who doesn’t really seem to understand my...
I wonder if the overdiagnosis in some populations has to do with physicians not being very rigorous criteria wise. Ie. if in their head they...
I honestly have been hovering between these three ever since I got ME. I think what I have to say about PEM that is unusual. Is that it doesn’t...
So it’s a poorly though out name (and mechanistic assumption) for a constellation of symptoms. Just like “POTS”, “EDSh”, and arguably “ME” is.
Yes that’s what I was diagnosed with. I thought it was just the french name for MCAS.
Separate names with a comma.
