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Clinical Trial for Long Covid Brain Fog in Chicago

Posted by emo @emo, Aug 27 8:57am

I just recently got accepted into a clinical trial for Long COVID brain fog at Shirley Ryan Ability Lab in Chicago, and figured I’d share since I noticed several posts from folks in the Chicago area in this support group.

SRALab is the #1 rehabilitation hospital in the world (as they like to say in all their ads), and I’ve been a patient there for years. It’s a 3-year study where they’ll be enrolling and moving people through their program, though participation is for a matter of weeks with a combination of an at-home computer program and once weekly in-person visits at the downtown location for a time.

Everyone gets the intervention, which I thought is pretty cool—there’s no risk of getting the “sham treatment.” I’m almost done with a series of speech therapy appointments and I learned from my therapist there are no official guidelines or evidence based treatment for brain fog…at all, not for any other conditions or Long COVID, so we’ve been working mainly on “compensatory strategies” and coping skills. So it felt exciting this study is seeking to identify a treatment.

If anyone is interested, there’s a survey to see if you’re eligible and more info here: https://www.sralab.org/clinical-trials/intensive-attention-training-treat-brain-fog-individuals-long-covid

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

janeaddams | @janeaddams | Aug 27 12:01pm

Thanks for this info !

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ericy210 | @ericy210 | Aug 27 10:53pm

I’m in Northwestern’s long Covid program and they set me up with Shirley Ryan. Like 10 sessions or so. The therapist said she tells everyone, regardless of altered abilities, that they will never be the person they once were. They have to find different approaches and coping methods. It actually works. I’m not the same business guy I was. I take more notes, pace my meetings, take time to rest, deep breathe, and try to out.

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ericy210 | @ericy210 | Aug 30 5:20pm

Thanks a million. I followed your link, spoke with them, and we will schedule a time for me to come in for a screener.
I really, really appreciate how everyone here is trying to help each other out.

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1 reply
emo | @emo | Aug 30 5:42pm
In reply to @ericy210 "Thanks a million. I followed your link, spoke with them, and we will schedule a time..." + (show)
@ericy210

Thanks a million. I followed your link, spoke with them, and we will schedule a time for me to come in for a screener.
I really, really appreciate how everyone here is trying to help each other out.

Jump to this post

That's awesome! Thanks for sharing; I've been having a rough week and that made me smile. I know we don't know if it'll help, but it feels good to try something. And I found that the lead speech therapist is super-nice.

I didn't mention this, but when I first reached out, she told me it was a 3-year study, so there was no rush, and she wanted to make sure I knew my options. She knew I had a speech therapy order already, but there can be a wait to get started with therapy there, so she advised me to check on the wait time first so that I could figure out if I either wanted to start therapy first or do the clinical trial so that I could have the best chance of getting relief, more quickly.

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1 reply
ericy210 | @ericy210 | Aug 31 7:19am
In reply to @emo "That's awesome! Thanks for sharing; I've been having a rough week and that made me smile...." + (show)
@emo

That's awesome! Thanks for sharing; I've been having a rough week and that made me smile. I know we don't know if it'll help, but it feels good to try something. And I found that the lead speech therapist is super-nice.

I didn't mention this, but when I first reached out, she told me it was a 3-year study, so there was no rush, and she wanted to make sure I knew my options. She knew I had a speech therapy order already, but there can be a wait to get started with therapy there, so she advised me to check on the wait time first so that I could figure out if I either wanted to start therapy first or do the clinical trial so that I could have the best chance of getting relief, more quickly.

Jump to this post

The clinician said there’s like four different test groups and at the end, everyone gets to use whatever the most successful method is proving to be.
It’s a total win-win-win. We provide them with data to help science, solutions are approved/refined and rolled out to all of us, and we in the test all get the best brain workout. Whatever helps with brain fog, I’m up for it. Everyone with it knows it sucks.

As a tip, a long Covid neurologist said my guitar playing and figuring out a new computer and music production software is great cognitive therapy. He said it makes me have to process sound, solve problems, organize my approach, be creative, etc.

It’s slow going, but his main point was it’s good to keep my brain fogged busy with anything to work it into shape.

Thanks again

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