Patient Resources for Long Covid

Thanks, @diverdown1. Do you know if the Long Covid Alliance is still active? It looks like it hasn't been updated since 2023. The latest reports, media, webinars, resources are dated 2023 or earlier.

@colleenyoung Good morning, they are still active. My suggestion is to reach out to them, if anyone is interested. Their website is copyrighted for 2026, however I do not know if the research funding is cut or if they have not published since 2023. I reached out to them and they sent me a list of resources, however as I said in an earlier comment, a lot has changed since 2024.
https://longcovidalliance.org/
https://solvecfs.org/
Already posted these folks, but just in case...

@diverdown1 I appreciate this. Resources that are still active can be hard to find. Thanks!

Anytime I see something that surrounds research of Long COVID, I post it here. This is a group that studies Long COVID and presents findings as well as there is access to research results and also chances to be involved in studies.
https://recovercovid.org/videos

I am attaching three flyers from recover covid's website. There are more and more info on their website.

@diverdown1
Thanks for posting this. I contracted a COVID like virus in Oct 2025 and after 5 weeks of illness I finally went to the ER, dehydrated, starving, and having serious tremors. The doctor just kept trying to admit me to their alcohol detox ward. Finally he got me a bag of saline and ordered some tests, but they were all negative. So I'm not sure what I have, but every single symptom I've had all point to COVID. Doctors in my area all seem to think it went away, so I've been navigating this on my own for 9 months.

That you for posting. When I got sick in 2022, my labs were crazy. It was apparent that I had some kind of auto immune disease, however all my tests were negative except for the anti-nuclear antigen (ANA) and also Epstein Barr Virus, as well as Parvo, was reactivated in me. I have since gotten more blood work and it does not show the ANA titer nor the RA IgG, which was the initial belief of an RA specialist, who it was obvious did not believe me when I told her I believed it to be Long COVID. I have not experienced tremors except when I drank. I am a recovering alcoholic, so tremors go along with withdrawal, as I am sure you probably know. I guess that is why they thought you needed detox. The issue is that they did not believe you. That is very common and you will read others' posts who are also frustrated and feel alone because of that fact. Most doctors have no idea what to do, so they treat the symptoms. Hang in there. People on this site post a lot of good information, some works for some, some does not, however, we all are trying together to make it through this. So glad you posted.