The cost of #LongCOVID This is ONLY March - present of this year. Prior, Jan-Feb I paid $2,000+. My SSD is ~$1,400/mo. I have Medicare. I currently owe over $8,000. This is not sustainable with living. I am one of tens of millions with Long COVID.

Join us for a free #LongCOVID #Disability webinar on October 8th at 3pm ET! The webinar will discuss the confusing & frustrating insurance system, understanding your rights, preparing stronger claims, & knowing what to do if benefits are denied. Register here: us06web.zoom.us/webinar/regi...

This is absolutely horrible news. Let’s bring the prey on vulnerable patients desperate for their lives back who will do anything, even pay their life savings, sell their homes, etc crowd to lead Long COVID research. Think supplement peddlers meets meets Fl surgeon general, meets cure offerer.

You know what worked… The collaboration and unity that was summer fall and winter 2020. Bring that back. Drop the ego’s. #LongCOVID solutions depend on it. OUR LIVES DEPEND ON IT. This 2023-present fighting and race to the top of the podium isn’t it.

After two long years of fighting and advocating for myself, my port is in. Hopefully this gets me better access to medical care and quality of life. #LongCOVID #POTS #Gastroparesis

Nothing like pending a lymph node and bilaterally tonsillectomy next Friday, and being told the port I was waiting til January for is now being put in THIS Friday. Not mentally or physically prepared for this.

Can I tell you that I really never thought I’d be in people’s inboxes and DMs like hey do you want my organs and tissues for Long COVID research, I’m having them out in two weeks. What a time.

As school starts tomorrow for parts of Florida, this is a reminder, that when schools start back up after summer, winter, and spring break, transmission & cases take off. While you should ALWAYS protect yourself against COVID+, take the extra precautions the first few weeks. ⬇️

Me: submits a modification request for my home for my disabilities. HOA: no, doesn’t align with bylaws. Me: ada/ fair housing request supersede HOA: no Me: your fines for not complying at astronomical plus my civil suit. HOA: no Me: ask the HOA attorney. HOA: approved

The comments …chefs kiss www.tiktok.com/t/ZTjEvgBVW/

Report or find ICE spotting here: padlet.com/PeopleoverPa... Spread the word!

I better see all the white + families helping carpool and get these kids to their games and tournaments for their parents who may be afraid to go.

From our friend Allison, from what was once the Office for Long COVID. 💜 open.substack.com/pub/inneruni...

Florida: Sooooo where are we all getting our saline from? What insurance / manufacturing companies are back up and running and able to supply post hurricane that took out facility? I need a port but that comes with fluids and apparently it’s still an issue. Honestly at about life or death point.

Annnnd I’m getting a port and home heath services. 😔

Extremly bad news today folks. 🧵 www.msnbc.com/opinion/msnb... The “One Big Beautiful Bill,” passed by the U.S. House of Representatives on May 22, 2025, includes significant reductions to major social programs:

I tried to watch the Polybio today but after about 2hrs my fractured nose & concussion said no more 😔 I’m pretty disappointed! But, I look fwd to the recording & going back through things. Staying up to date is essential yet limited opps exist. Ty participants.

Senate Committee on Indian Affairs Leaders Warn RFK, Jr. Against Reorganization That Threatens Native Health Programs nativenewsonline.net/health/senat...

HI! am looking for assistance programs/ grants that help people with disabilities with the costs to make their homes accessible. My main issue is my home is in a trust and I do not qualify for many programs as technically the “trust is the homeowner” which is insane. TIA

If you have social security and owe student loans, this is a very important piece of info to have and know. Just another way the disabled and chronically ill will be harmed. www.businessinsider.com/student-loan...

Buckle up: www.whitehouse.gov/lab-leak-tru...

Studies across 14 nations show 25% to 30% rate of long COVID Among the 25.1% of participants who said they experienced long-COVID symptoms, 12.8% reported sleeping disorders. www.cidrap.umn.edu/c...

Republicans: COVID ruined kids education when schools shut down a few weeks. Republicans: kids getting shot and dying and being traumatized by said shooting has no impact on their education. #FSU #MSD

@massgenbrigham.bsky.social you are failing the very patients you took an oath to protect. People should not have to become chronically ill, disabled, or die because of your lax & negligent policies. Masking saves lives in more ways than one & prevents the systemic consequences. Do better!

#StopLogging #NationalForrest #LandBack contact your members of Congress

@50501movement.bsky.social Hi all. Here to talk about disability and an Idea for organizers and the community to participate in many of these events. Many of us are In 100% support and want to be Involveded but cannot physicallylly show up. We want to he visible, fight, and show support. 1/2

Tomorrow is the #HandsOff rallies with #50501 nationally. Here is the list of all locations! docs.google.com/spreadsheets... #HandsOffLongCOVID looks good on a poster. Wear teal!

Pretty interesting site www.isidewith.com/candidates/r... on @SecKennedy “stances.” Here’s a highlight of a few. Such disconnect.

In 30 seconds you can support millions with Long COVID. Tell the admin to keep their hands off #LongCOVIDPrograms! actionnetwork.org/letters/long...

Devastating.

You know how many family members and friends (outside LC community) checked in on me for #LongCOVIDAwarenessDay & my 5-year #LongCOVID anniversary—acknowledging the disability that ruined my life & caused immense trauma & hardship? NOT A SINGLE FUCKING ONE.

Did you know it was Long COVID Awareness Week? Join us for a week of actions and events that help raise awareness and drive solutions for #LongCOVID. #LongCOVIDAwareness cannot happen without you! Head over to www.longhauler-advocacy.org/lcad-2025 for ways you can get involved!

#LongCOVIDAwareness2025 3/10– A Day of Community Recognition & Support Today begins #LongCOVIDAwarenessWeek & #FiveYearsLater, we stand together to recognize & uplift those impacted by #LongCOVID & cont the fight. Head to bit.ly/LCAD2025 for our daily calendar & instructions! #LongCOVIDMassFollow ⬇️

TODAY AT 3pm EST Topic: Five Years Later: The Ongoing COVID & Long COVID Crisis, & the Future of Public Health Register zoom.us/webinar/regi...

Invest in change. Donate to help strengthen policy reform, public health initiatives, and patient-led action. Your support fuels progress! bit.ly/C19LAPDONATEPP #LongCOVIDAwareness2025 #DonatetoLongCOVID #LongCOVIDSupport #NonProfit #LongCOVIDAwareness #LongCOVIDAwarenessWeek

#LongCOVID policies impact lives. Share how recent government actions (or inaction) have affected you and why funding, programs, & protections MUST continue. Instructions Here: docs.google.com/document/d/1... #LongCOVIDAwareness2025 #LongCOVIDPolicy #DisabilityRights #LongCOVIDAwareness ⬇️

Your story matters! After completing our action, send a personalized letter about your #LongCOVID experience, needs, and policy demands. Instructions: docs.google.com/document/d/1... #LongCOVIDAwareness2025 #ResearchFunding #LongCOVIDPolicy #LongCOVIDAwareness #LongCOVIDAwarenessWeek⬇️

Complete our 30-second action to contact the President, VP, Congress, Governors, & state legislators. Demand action for #LongCOVID NOW! 🔗https://bit.ly/LCA25AN #LongCOVIDAwareness2025 #LongCOVIDAwareness #LongCOVIDAwarenessWeek #ContactNationalLeadership #LongCOVIDPolicy ⬇️

3/10– A Day of Community Recognition & Support #FiveYearsLater, we stand together to recognize & uplift those impacted by #LongCOVID & continue the fight. Head to bit.ly/LCAD2025 for our daily calendar & instructions! #LongCOVIDAwareness2025 #LongCOVIDMassFollow ⬇️ 🧵

Today #LongCOVID patient advocates were removed from the AHRQ #LongCOVIDCareNetwork at the direction of @HHSGov due to a contract being terminated by #ExecutiveOrder. The initiative remains, but the #patients do not. #NothingAboutUsWithoutUs #LongCOVIDAwareness2025 IS A MUST!

Sometimes I get really mad at research. Like when I’m ignored 5 years ago because “I’m just a patient” on a topic and yet today it’s published and accepted. An Allele of the MTHFR one-carbon metabolism gene predicts severity of COVID-19 www.medrxiv.org/content/10.1...

Change your profile picture for #LongCOVIDAwareness2025 (or forever!) - save the below and upload it as your profile picture. We are trying to work on a profile ring (tbd on availability- see comments for example).

Five Years Later: The Ongoing COVID & Long COVID Crisis, & the Future of Public Health Join C19LAP founder, @KBishof.bsky.social & @mtosterholm.bbsky.social, @CIDRAP.bsky.social Director (UM), for a webinar on March 12th at 3pm EST. Register & share: bit.ly/c19lapostweb #LongCOVIDAwareness2025

Calling all International #LongCOVID orgs & groups! Contribute to an international calendar for #LongCOVIDAwareness2025 Day | Week | Month! -Add Events: bit.ly/LCAD2025AE -Sign on: bit.ly/LCAD2025SO #UnitedForLongCovid #PreventandCureLongCOVID #COVID #PublicHealth

The Federal Advisory Committee on Long COVID has been ordered terminated on 2/19/25 within 14 days. “the Secretary of Health and Human Services shall terminate the Secretary’s Advisory Committee on Long COVID.” www.whitehouse.gov/presidential... #LongCOVI

Get out there y’all. Find protests on #50501 socials. #Florida50501protests

Valentine’s Day for many in S. Florida is remembering & mourning the 2018 Marjory Stoneman Douglas School Shooting. As I look back on my pictures & videos, I always cry when I get to the video of the elementary school babies cheering on the highschool babies fighting for their lives. #MSD

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