I don't know how connected this sense is to anything "real", but in the last year I've increasingly thought that the subjective experience of...
Same.
I'm very severe, and I still experience my PEM on a delay of about 24 hours, with the peak in symptoms at roughly 48 hours. There are some...
Both times I had covid (2022 and 2024), once my very high fever passed, I felt great for about 3 weeks in terms of mental acuity and creativity...
It matters to me insofar as: 1) More severely ill people may have more of whatever is wrong in their bodies, which may be important for detecting...
Sorry for writing so much! The more I think about it the more frustrated I am that researchers and medical practitioners often have a different...
I have very severe ME/CFS and have been fully bedbound for 3 years, and I would answer that question with "a few days" or "not at all". It only...
I can see the discussion has somewhat moved past the 'poisoned' label, but as someone who has been poisoned (near fatally - I wound up in a coma...
I get a form of PEM that only affects local muscles - I'm fully bedbound, and if I use my legs a bit for instance to push myself a little way up...
My experience with alcohol was that when I was mild, I got drunk very, very easily - 1 small beer or bottle of cider would do the trick. I liked...
No, it feels equally overwhelming on both sides. However (and I know this is only tangentially related) my tinnitus sometimes presents as only...
When my ME/CFS was mild, I did catch a few colds (I'd say 1 or 2 a year), along with EBV, and something that caused tonsillitis. Since becoming...
No, I don't get puffiness in the face. I do however experience a strange swelling of the hands and feet, and knees if my legs are locked...
Thanks, @Hutan. I wish there were more resources online from the perspective of a disabled person, rather than for nurses. Now I know to look in...
A couple more things: - My vitamin D didn't get low, even after a year with minimal sunlight followed by a full year of darkness with all shades...
I've been fully bedbound for almost 3 years now. This year, I tried a little bit of physiotherapy at home with a visiting therapist who...
I also can't vote because I don't accurately know. I didn't realise I was sick at all until I'd been experiencing clear PEM for a decade; I did...
Suicide attempts by other means are unbelievably horrific, which I know from experience. I have devastating PTSD from mine. Even if I knew for...
I think the bendiness is a bit of a distraction for these patients, like how fatigue isn't really the main problem for a lot of us despite what...
I don't know if this resonates for other people, but I think my tinnitus is tiny muscles in my ear shaking rapidly back and forth, or spasming. If...
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