Thread by @AlisonSbrana

I want to emphasize how debilitating #LongCovid can be.

First slide: #LongCovid patients more likely to have difficulty w/ chores, stairs, 15 min walk, errands than cancer rehab patients.

I am familiar w/ this, bc I’m 7 years into disabling post-viral illness (#MECFS) myself

https://twitter.com/RealTimeCOVID19/status/1396959096679505924

From a systems perspective: this means we need to look at the services provided to cancer patients, and provide that to #LongCovid patients, at a minimum.

Ask any #LongCovid patient in @itsbodypolitic and I can guarantee you that is not happening currently

If I could have it my way, I’d want every #LongCovid pt in the US screened for Medicaid HCBS eligibility. Difficulty w/ ADL’s is significant in #LongCovid and these patients need support at home to have a chance at properly pacing to support potential recovery

Ask #PwME — it’s really hard to pace yourself if basic ADL’s in itself exceed energy limit for the day. Bc that doesn’t include other necessities like going to appointments, meal prep, cleaning, laundry, dishes, picking up prescriptions, scheduling and coordinating your care, etc

For rehab providers looking for #LongCovid resources, please see @LongCOVIDPhysio — resources gathered by #LongCovid patients who are professionals themselves.

https://twitter.com/darrenabrown/status/1397086125592809479?s=20

For providers looking for research on #LongCovid — please follow @patientled bc there is much to be learned from patients themselves. This team of researchers formed as #LongCovid patients w/ research experience in @itsbodypolitic to study #LongCovid

https://twitter.com/patientled/status/1343300829265145856?s=20

I have a lot more to say on this topic, but yesterday I crashed before I could add more than a few tweets, and today I have 3 medical appointments so I must conserve all of my energy for that. (P.S. that’s what delaying healthcare during the pandemic for my own safety looks like)