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I’ve considered the same thing, but I think it probably depends on the clinic and how supportive/involved your care team at home may or may not be…

I live near Chicago and I’m a patient at Northwestern University, so I’m not that far from you. There’s a long COVID “clinic” here, but it’s not a physical space; it’s more a network of providers set aside who see long COVID patients. I know someone with long COVID more severe than me, and she hasn’t had a very positive experience, except with pulmonology, so it doesn’t seem that different from what I’m doing independently with my own care team. She also said they seem more interested in tracking and research than coordinating her care. But that’s just one person’s view.

I feel I have it on good authority though that it wouldn’t have been a good fit because my PCP and neurologist both told me they have patients in the long COVID clinic and they didn’t feel it was worth the wait or trouble for me.

That said, they did get a new NP in Neurology who came specifically to coordinate care for long COVID patients and is supposed to be really good. I have an appointment with her in a few weeks, and I can report back in case that might be an option for you. I only went through with it because my Neurology NP did recommend her whereas she was one of those not recommending the long COVID before.

I also have an appointment in May at Johns Hopkins with the POTS Clinic, but the director there does a lot of work and research with long COVID.

Hopefully you’ll hear from others here and maybe there will be someone who’s familiar with Cleveland Clinic.

I’ve heard of people who had positive experiences with Cleveland Clinic for POTS but mixed things about Mayo… As you probably know, POTS is similar and can also be caused by long COVID, so that seems promising?

I know you didn’t mention Mayo, but with chronic fatigue and chronic pain conditions, personally I feel Mayo sometimes has a very conservative approach, which can sometimes be limiting because they emphasize lifestyle changes so heavily and their chronic pain rehab program, and I don’t feel like that’s wrong necessarily, but it’s my perspective that these kinds of conditions require integrated and multi-faceted care. Something like pacing and OT alone aren’t going to get us as far as I feel we could go (I’ve been evaluated at Mayo twice and I have chronic conditions that are similar or related to long COVID, including POTS, and I have not had a positive experience with Mayo).

Thanks for asking the question. I’m interested to hear from others too, and I’m wishing you all the best.

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Replies to "I’ve considered the same thing, but I think it probably depends on the clinic and how..."

@emo Just wondering if you've gotten in to see the new NP at NWMH LC Clinic? I have been on their waiting list since August, 2023, scheduled to begin next week (4/1). Just got a call informing me that the neurologist I was to see (Dr. Carroll) is no longer seeing patients in the LC clinic, and next available for me will be 9/11/24! So disappointed. Though I didn't have high hopes for much help, still... Wonder if I should try to get in to see the new NP in Neurology? Would be interested in learning what your experience with her has been.