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Patient Resources for Long Covid

Posted by diverdown1 @diverdown1, Jun 25 8:31am

I do not remember if I have posted this site before for LC: I may have already posted this site. The last email I got from them had a lot of resources.

Here is the site.
- Long Covid Alliance: Patient Resources https://longcovidalliance.org/resources/patients/

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

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Colleen Young, Connect Director | @colleenyoung | Jun 25 2:34pm

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.

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diverdown1 | @diverdown1 | Jun 26 5:33am
In reply to @colleenyoung "Thanks, @diverdown1. Do you know if the Long Covid Alliance is still active? It looks like..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

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.

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@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...

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altilla | @altilla | Jun 26 8:05am
In reply to @diverdown1 "@colleenyoung Good morning, they are still active. My suggestion is to reach out to them, if..." + (show)
Profile picture for diverdown1 @diverdown1

@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...

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

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diverdown1 | @diverdown1 | 3 days ago

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

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mountainmarge | @mountainmarge | 2 hours ago
In reply to @diverdown1 "I am attaching three flyers from recover covid's website. There are more and more info on..." + (show)
Profile picture for diverdown1 @diverdown1

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

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@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.

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