People w' #longcovid weren't able to get testing until late. There are people on my same timeline who are only now learning they had strokes & encephalitis & heart attacks. MRIs/CT scans were only accessible in the ER. Drs were solely looking at the lungs for way too long. 4/

The symptoms are bizarre. There are people with brand new #allergies to the point of anaphylaxis; others whose allergies have disappeared. Post-menopausal women who are having spotting and periods again. Medications spontaneously stop working, need to be adjusted higher/lower. 5/

It causes flareups of other viruses, past surgeries, other conditions. Old injuries are raw & feel new again. My left leg & foot, injured in a moped accident in 2017, feels crushed like it happened yesterday. Intolerance to exercise, alcohol, caffeine, & stress are common. 6/

Insomnia is common. The dreams are vivid & bizarre, often lucid dreams, often violent & nightmarish, many reports of dreaming about people who have passed away. The symptoms wax & wane; you think you're getting better, only to be hit again. New symptoms appear constantly. 7/

The CDC is starting to acknowledge us & the #LongCovid numbers are high: 35% of people are not back to normal after the suggested 'recovery' period. Given the US's current cases of 4.2 million, that's 1,470,000 long haulers in the US alone. cdc.gov/mmwr/volumes/69/wr/m… 8/

In patients aged 18-34 with no pre-existing conditions, that number is 20%. I was in that unlucky camp & you could be too. This life is a weird parallel one where almost everything in your old world feels alien & unreal; I don't want it to happen to a single other person. 9/

I had been isolating for 11 days on the day of my first symptoms and I probably got it on a trip to the grocery store. There is almost nothing that is worth losing 4+ months of your life in this way. No BBQ, no tech event, no haircut. 10/

This isn't the flu where you can curl up with netflix and tea for a few weeks; this is an active, awful illness with neurological effects for most. For now we're holding out hope for #recognition, #research & #rehab. And we're doing our own research: patientresearchcovid19.com/ 11/

I want to add that people with myalgic encephalomyelitis (#pwme) have gone through this same thing without any of the attention #LongCovid is getting; we need to remember them & bring them along with whatever recognition & funding we receive. And IMPORTANTLY, like #ME... 12/

...we are going to be in trouble if we start getting lumped into a singular diagnosis or the dismissive "chronic fatigue syndrome"; everyone's #LongCovid struggles are different, not everyone has fatigue/exercise intolerance, advocacy for heterogeneous treatments is vital! 13/