Getting into the Mayo Clinic’s long Covid programs

There is a self-guided Long Covid Program that I am doing. They send you a link and you do it at your own pace.

@lauriebee, here is more information about the long COVID programs at Mayo Clinic in both Rochester, MN and Jacksonville, FL https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/#ch-tab-navigation

The program in MN is called the Post-COVID-19 Care Clinic and in FL Post-Acute Sequelae of COVID (PASC) Clinic. Others have found the Pain Rehabilitation program to be beneficial, which is offered at all locations (AZ, FL and MN)
- Pain Rehabilitation Center https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713

You can talk to an appointment specialist to learn more. See the contact numbers or online form here: http://mayocl.in/1mtmR63

I'm tagging a few members like @arichards3 @baker00l @ldropps @naturalblondeone @kitty2 @edsdad69 @wygal and @joanma, who have been to Mayo Clinic to help with long COVID so they can share their experiences and offer guidance.

@mitfit, can you share a bit more about your experience with Mayo's self-guided program? How did you register?

Sure! You have a phone interview with a nurse at Mayo and they explain the program to you. They send you the link and there are remote check-ins.

@lauriebee I had a fairly easy time getting into the Mayo's post covid program in Rochester back in 2021. It may have been due to my comorbidities. Plus I'm already a Mayo Clinic patient. In 2009 they repaired a half inch hole in my heart. It seems like I just had my primary submit a recommendation to insurance and once approved I tried to make an appointment. There was a questionnaire that I had to fill out before they would accept me, but that was pretty easy. I did have my positive covid test on record with my doctor. I first tested positive back in 2020 so I had a drive thru test done in an ambulance bay.

The testing that was done ruled out a bunch of other things. So in my case it felt like the Mayo Clinic was no more helpful than their Fibromyalgia book. The daily exercises that they instructed me to do come straight out of that book. I found out after I was diagnosed with Fibromyalgia this year.

They also do not provide continuing care. I had a question after I was done with the program and was told they couldn't help me unless I was approved to start the program again. That was quite frustrating. Luckily, I found a great local rheumatologist.

I'm not trying to bash Mayo. They are amazing. I just think they are overwhelmed with the number of people with long covid. I'm hoping things are different now.

Good Luck!

I have been dealing with Long COVID since 2020 and have found few sources of help. I thought maybe Mayo in Rochester could help with their outpatient program, so I went through the interview process and filled out the applications, but was denied on Tuesday. This is very disappointing to me since that leaves me with few options. I am trying to get enrolled in a program through the Ft. Wayne, Indiana hospital, but have not received any acknowledgement of my application. I have not been able to walk since 2020, except for hobbling with a cane and am just so frustrated. I am going to try to get access to the link to the home exercise program via Mayo. Any recommendations on how to do that?

My 82 year old mother, who is never ill, took the vaccine January and February of 2020 and got deathly ill in October 2020 or 2021. She has long Covid and has been fighting it since. She passes out, is dizzy and has been to the ER 3 times since. She also has brain fog, hot and cold flashes all day, and fatigue beginning in mid afternoon. She has been to countless specialists with no answers. Please help her. We live in Jackson, Mississippi. Thank you for reading this and God Bless You for helping!

I have been to Mayo and am in the NIH research program at UNMC. While they have all been empathic and thorough, there is really nothing new except they are admiring that the virus was nasty and affected all kinds of neurotically based functions in the body. They say that they are seeing many of the symptoms clearing up with time as the body heals but there really isn’t anything they have found to speed up the process. I am 3 years in and am gradually seeing relief but still have brain fog, fatigue, taste and smell issues etc. the good news, as my GP tells me, is that with all the extensive testing that I have gone through, there is nothing serious going on.
So to answer your question, I am being told that the clinics can’t really do too much because the don’t know too much. I am going in for some more research tests next week and I will post what I find out.
Frustrating for sure but I feel confident that our medical people are doing all they can

The fainting could be due to small fiber/autonomic neuropathy caused by Covid. She could have a tilt table test to diagnose it.

So sorry!

This may be a dumb question but do you use your insurance for this? I work for a large healthcare system in Michigan and they only allow us to stay within our own healthcare system and they unfortunately have nothing for long covid.