m.facebook.com/groups/48823... There's a group on FB called "Academics with ME/CFS and/or Long COVID"
I have the same problem for 3+ years since getting long COVID. I set my phone screen to black and white, reduce my monitor brightness a lot, and use a browser extension called Dark Reader to view all websites in dark mode.
Ugh😫. Had the same thing 3 days ago comparing results on a new test with an expired one. Hope it's genuinely mild and with no longer term effects 🤞🏻
Glad to hear it. It's slow going. I'm 3.5 years into this now. I can get around a little now but cognitive exertion is a much bigger problem, as well as some orthostatic intolerance, I think.
Aye, for me Twitter was great for its LC and ME communities. It's still much bigger on there than here. Very hard to move it. Chronically ill people have limited energy + there's a ton of really useful posts built up over years there.
Also great you got some real help from your LC specialist 🤘🏻
I'm more familiar with the post exertional stuff. Only had some relatively short lived mast cell/histamine stuff but it was rotten. I posted a reply with a link that might help. Hope you can also get some progress with the post exertional stuff. That's the big problem though!
More on mast cells and histamine in #LongCovidsynecdochic.dreamwidth.org/805203.html
From what I've seen on Twitter, many people with #LongCovid have problems with mast cell activation (#MCAS). Histamine is one substance that mast cells release - reducing extra histamine, e.g., in diet, can help with symptoms. Hope you get more relief too.