4 ms·
My conclusion hasn't changed. People with bad ME spend 99% of their lives lying down in darkness. I recognize that phone calls can be extremely draining for aut
by skrebbel 2y ago
My conclusion hasn't changed. People with bad ME spend 99% of their lives lying down in darkness. I recognize that phone calls can be extremely draining for autistic people, but walking 12 steps can be equally draining for people with ME. It's only comparable when you make two lists of symptoms and compare them by checking boxes, disregarding qualitative aspects. It's the medical equivalent of tech HR people saying you can swap any C++ programmer out with a different C++ programmer, because they both got "C++" on their CV.
It's hard for me to qualitatively reject your comments here because you're being very precise, and quote all kinds of sources that look very sciencey, whereas I only have the lived experience of myself and people near me. All I can say is that ME is a bitch, and your comments make me feel like you think ME isn't so bad and is just part of the package of autism so deal with it.
You say that your point is that "What helps autistic people with fatigue is not unlikely to help CFS/ME fatigue", but nobody was arguing otherwise. In fact, you made that point in response to a comment that merely said "wow that's many disorders! ME is a bitch!". This makes it seem very much like you're downplaying the life struggles of people with many disorders and/or ME. I can imagine you don't mean to, but it's how it comes across. It's that implication that I object to.
When you say "Damn I hate spinach" and I start listing the many health benefits of spinach, and studies that show that well actually, 84% of people really like the taste of spinach, and other studies that show how spinach is an acquirable taste, I doubt you'd experience that as helpful. This is how I feel reading your comments here.
- romwell 2y agoTo the contrary! My point was that out the lot of disorders listed, ME is the real bitch, and a bunch of others can be grouped together.
- romwell 2y agoIn any case, I can assure you the implication you object to wasn’t intended, and my sincere apologies for writing a comment that appears to give it. Thank you for explaining what’s wrong with what I wrote. I’m autistic (if that wasn’t apparent), and implications aren’t my territory. Take what I wrote in the most literal sense possible. I can’t edit that comment, but I’ll surely try to be more mindful next time I write about this.
- skrebbel 2y agoImplications are hard! Glad to help & sorry for being grumpy about things earlier.