Long COVID providers/specialists?

"...just about every specialty still are learning about long term affects"

You know, this is pretty much the same malady as "chronic fatigue syndrome" aka ME, and that has been around, and studied, for DECADES, so personally I feel it's ridiculous that more progress hasn't been made!
Also, the NIH has given grants of more than a BILLION dollars (https://www.niaid.nih.gov/grants-contracts/long-covid-and-recover-tlc-initiative) some THREE years ago and still...crickets?!
Of course, with the brilliant new head of HHS and the administration clawing back scientific and medical research funding, we will soon probably have to rely on such remedies as hookworm treatments and bloodletting to try to cure ourselves.
Call me cynical, I guess.
(need to go lie down now...)

The struggle/reality is real AND your post made me burst into laughter (I’m already in bed). I needed that. Thank you.

Thank you for that cheryl46.
I would love to hear more about people's experiences with Mayo clinic and how the approach LC, given that this IS, after all, a Mayo cliic discussion board!

I wasn’t able to get into Mayos LC clinic but I have a friend who was and found it very helpful. He sent me the self-management course which is self-paced and online and was well done like all of their content. He’s also been a part of studies on the role of probiotics in LC recovery which was interesting to learn about. I started this thread due to my inability to be seen at Mayo yet respecting the institution given my previous experience as a dietetic resident in addition to the great care my husband and others have received.

Thank you for that.
Since you say it is online, can anybody access it?

Sure this will be classified as a slow advancing terminal disease at some point. The inflammation migration throughout the body organs is becoming an obvious major long term issue.

I hope that isn’t the outcome for the sake of everyone reading this thread and suffering through the ambiguity. I’ve had Long COVID for over 4 years and personally have noticed very very very slow improvements during that time. That has to mean something about the bodies ability to heal. For me lifestyle management has been the driver of these slow improvements- managing stress, pacing myself, getting adequate sleep and hydration, low impact movement- even if it feel like I’m doing nothing, eating nutrient rich anti inflammatory foods and surrounding myself with a community that loves and supports me. When I waver from these things is when I feel the worst and find myself in bed much more, feeling more depressed, with active “flair like” symptoms. Everyone’s experience is difference but wanted to share some hope even though each new day bring on new opportunities and challenges alike. Lots of love to everyone- wherever you find yourself on this spectrum today.

Sadly no. You only get a link if you go through the program. The one shared with me by a patient in the program I believe has expired.

I was actually seen for GI problems post Covid so my rant wasn't aimed at Mayo at all.
GI issues were basically something they hadn't seen before. They did send a referral to LC clinic due to other problems (post covid) and I was denied.
I apologize if I came across as rude.
All my doctors are at UTSW in Dallas TX, and I have them all stumped as well, lol

Thanks for your message Cheryl46. Didn’t come across rude- just wanted to explain why I wasn’t mentioning care at Mayo in the thread. Best wishes to you