So this is something I mentioned in my introduction and doctors are really dismissive of it, but this is such a huge issue in my illness that I'd like to find some kind of answer. Sorry if this is long but I'd like to explain it as well as I can. My PVFS was a direct continuation of my EBV infection, basically most of my symptoms just never went away after the infection itself was gone and they are still the same symptoms even now, just milder. One of the first symptoms was what looked like generalized edema. It happened during one single afternoon/evening that my weight suddenly started to increase (several kg in a few hours) and my belly started to become bigger and bigger, to the point that I panicked and rushed to the hospital at night. They sent me to internal medicine right away but there they couldn't explain it and I got the impression that this was not the kind of edema they were used to when they examined my body. Then during the mono infection it stayed and actually became worse even after the infection (about 10 kg at some point - I looked quite distorted because I'm really tiny and I had to buy bigger clothes), then very slowly and gradually I started losing it over the course of 2 years, as my other symptoms got milder too. Afterwards it stopped going away and I still have it to a smaller (but still visible) extent and now it's just forever there, like my other remaining symptoms. It is generalized. I first noticed it on my belly but it is everywhere. It is more pronounced on my midsection and legs (thighs mostly but also lower legs, but not so much on the feet). It responds to gravity and moves during the day. In the morning my face is swollen, more visibly in the upper eye area but it is everywhere, my nose etc and my whole face are bigger too. Later during the day my belly and legs get more swollen and my face less so. It is not independent of my other symptoms: when they are stronger, the swelling is significantly worse and when they are milder, the swelling is milder. I use a scale to measure myself every morning and my morning weight is a laser-sharp predictor of me having a good or bad day that day. If I start to feel worse, my weight starts to change immediately too and I feel my trousers tighten and I can physically feel my belly grow and tighten too. The bad part: the really excessive swelling was never checked with ultrasound but the current version was (I believe it might be 3-4-5 liter now) and the ultrasound didn't show it. My doctors say it is not water because they would have seen that. They say it is fat but there is no way this is fat, it changes every day and gravity affects it. They say it is not pitting, on the other hand my tongue always holds the shape of my teeth (but not before). I know it doesn't sound like an ME symptom but this is definitely connected to my illness. So has anyone seen anything like this or has an explanation? Thank you.