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Every single symptom mentioned here are symptoms I've had since my first infection with Epstein-Barr in Glandular. I really wonder what connections we'll make, & whether long term chronic health will turn a corner in terms of being recognised as a huge impacting factor on lives. https://twitter.com/BW/status/1325885267383881729
For a long time, if it isn't killing you, it doesn't matter to a lot of doctors - & that's really hard when it's part of your every day. I'm sad so many people are feeling effects of post-viral infection, but also angry it took this long/this breadth of impact for people to care.
That's not a particularly helpful opinion, or a happy one, or maybe even a fair one, but I wanted to say it in case other people have felt the same frustrations re: working from home as a whole being 'impossible' - till healthy people needed it,
long term infection being a 'vitamins' issue - till thousands of healthy people fell ill and didn't recover, etc etc. The list goes on. Anyway. I'm grumpy and sad and also hopeful and it's a weird amalgamation to manage.
There has never really been too much research into these conditions and I understand why, but the connections anecdotally between people with acute EBV infections and post-viral syndromes, as well as links between EBV and ME/CFS & fibro are fascinating to me. A lot to learn.
I'm hopeful this will trigger some more of the research taking place in these spaces and bringing some peace or progress to those who haven't had access to much before other than management as best they can, with whatever access they have.
