Carol 🛌👩‍🦼😷

Hi. My name is Carol. I am one of the #MillionsMissing. I had mild ME and a thriving career in Software Engineering. On 03/2020, I got COVID and never recovered. Then on 02/2021, my home care nurse reinfected me, and COVID completely disabled me. 1/ #MEAwarenessDay #LongCovid

👋 Today is a great day to start believing those of us living with #LongCovid Stay vigilant because #CovidIsNotOver

@haziethompson I keep tellin’ folks… If my asthmatic ass could SLEEP in an N95 in ICU on a recliner for days cause my mama was in the hospital… you can wear a mask to go to the store. Honest.

I learned very early in this disease: one of the most dangerous things I can feel is hope. Hope prevents me from accurately managing my ME/CFS and encourages me to overexert. Which can, in the end, kill me. It’s a very simple concept, yet it took quite a few cycles to accept.

Thanks to community support during our family emergency, today was a grateful in-person return to Capitol Hill. As first #LongCOVID org to join Defense Health Research Consortium, @LCCampaign met w/key bipartisan Senate staff to request Long COVID CDMRP funding. #WeCarryEachOther

@matchboxsign369 Thank you. I’ve been taking the AlgoNot brand for MCAS since 2021.

@TickedOffCodess Please look into liposomal luteolin. Much respect!

Very severe ME means lying in a dark room 24/7. No phone. No music. No visitors. Not because you’re resting. Because your nervous system can’t handle any of it. #MEawareness

@AarynKowalchuk Combination of prescriptions, over the counter, and supplements.

@TickedOffCodess Is that prescription or just supplements??

My daily med schedule: 9 AM — 23 pills 12 PM — 9 pills 1 PM — heart racing from walking to the bathroom 3 PM — 7 pills, then crash 6 PM — 12 pills, dinner in bed 9 PM — 14 pills 65 pills a day. This is Long COVID. #LongCOVID #ChronicIllness

If you value your brain, organs, and immune system, educate yourself on Long Covid. We need education, treatments, and prevention. Anyone can get it after one infection, no matter your age, race, health, or vaccination status. #LongCovid #LongCovidAwarenessDay

HIV/AIDS got AZT in ~2 years. Long COVID? 6 years. Zero FDA-approved treatments. In March 2025, 45 NIH research grants were abruptly cancelled. Community outcry got them restored. We shouldn't have to fight for our own research funding. #LongCOVID #LongCOVIDAwareness

It's Long COVID Awareness Day. Americans are still grappling with COVID’s repercussions, including Long COVID. I'll keep working to support research and education on this condition and other infection-associated chronic conditions.

Long COVID by the numbers: 400 million people affected worldwide 200+ documented symptoms 10–26% of COVID survivors develop it 0 FDA-approved treatments 6 years and counting Read that last one again. #LongCOVID #LongCOVIDAwareness

I’d really like to become a little less aware. I find myself not really having much to say today. #LongCovidAwarenessDay. Six years in, it feels like we’re still having to repeat the same things over and over, with little tangible change in day to day to life for most of us. 🧵

#Covid destroyed my family's health I should feel lucky that I 'only' have moderate ME I should feel lucky everyone in my close family knows the disease isn't psychological I should feel lucky my son 'only' has moderate #LongCovid I don't feel lucky #LongCovidAwareness #pwME

It’s long COVID awareness day, and we want an end to the pandemic. This will require: - state funded massive infrastructure upgrades to ensure clean air in every single public space beginning with healthcare settings, schools, and prisons, but also bars, shops, restaurants, etc.

People say "you don't look sick." That's because you don't see the 23.5 hours I spend in bed to get those 30 minutes sitting. Long COVID isn't invisible. You're just not looking. #LongCOVID #InvisibleIllness #ChronicIllness

March 15, 2020 → March 15, 2026. 6 years ago today, COVID took the health I had left. I still haven't gotten it back. Today is International Long COVID Awareness Day. I'm still here. We're still here. #LongCOVID #LongCOVIDAwareness

Severe ME/CFS means your body punishes you for existing. Not for overdoing it. For brushing your teeth. For chewing. For being awake. And almost no one is talking about it. #MEawareness

@NeleHelena @TickedOffCodess — I share a lot about ME/CFS, Lyme, Long Covid and life with chronic illness. Will follow you. 💙

I don't think instagram is for me because I like to share thoughts, not pictures. But I've made one a while ago and although I've not posted (yet?) I would like to see posts from pw ME the few times I open it. Who can I follow? I'm nele_helena.

People with #IACCI #LongCOVID #chronicLyme #MECFS symptoms -- please consider filling out this quick (~10 min) form about your experiences accessing medical care! Your answers will be used to improve our clinical practice & medical education at CoRE. redcap.mountsinai.org/redcap/surveys…