Alison Sbrana Profile picture
she/hers. board member for @itsbodypolitic COVID-19 & #LongCovid support group. ♿️Disabled by viral-triggered #MECFS & #Dysautonomia and related 8+years
Sep 19 5 tweets 5 min read
In case you don't know my story, I developed #MECFS #POTS etc. from a virus 8 years ago.

When the pandemic started, I reached out to @itsbodypolitic in May 2020 at the first indication of #LongCovid to help. I would never imagine the sheer number of people it would affect. Now today, I have close friends from @itsbodypolitic at the #MillionsMissing protest in Washington DC who developed #MECFS from Long COVID. I am devastated that millions more people now suffer from this terrible disease which we have no treatment for.

Sep 19 16 tweets 11 min read
I created this reel to tell my story of viral-triggered #MECFS and why I fight for a national emergency declaration with @MEActNet for #MECFS and #LongCovid :
instagram.com/reel/Cisx1oeDG…

Here's a thread of each still photo telling my story, for accessibility purposes: 1/ 3,087 days ago I got a virus and I never got better.

2/ #MillionsMissing #MECFS Alison is a white woman wit...
Mar 18 13 tweets 7 min read
Let's talk about peer support for #LongCovid –– I recently made this handout to help people experiencing Long COVID find a good community that fits their needs.

Here's the PDF via Body Politic's website (it has links embedded): wearebodypolitic.com/resources-for-…

A short thread 🧵 1/ A one-page handout titled Community Support for Long COVID w First, some context: I created this because I have lived experience.

8 years ago I got a virus and never got better. I've been living w/ chronic illnesses many people with Long COVID are now being diagnosed with like #MECFS #Dysautonomia #MCAS and so on, for 8 years.

2/
May 24, 2021 7 tweets 6 min read
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 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
Dec 4, 2020 103 tweets 49 min read
Watching day 2 of @NIAIDNews #LongCovid workshop. Right now: breakout sessions. I'm watching the neuro breakout session, led by Dr. Komaroff. @ahandvanish is there representing #LongCovid patients with @itsbodypolitic. Tune in: videocast.nih.gov/livew.asp?live… @NSU_INIM's Dr. Klimas spoke about early in the meeting about the history of #MECFS and challenges in developing diagnostic criteria for #MECFS without biomarkers, and the similarities and differences to #LongCovid. I felt represented by her discussion as a #PwME
Dec 3, 2020 34 tweets 16 min read
Going to try to pick up where @ahandvanish left off on live-tweeting today's NIH #LongCovid workshop

"We're really having an epidemic of this chronic critical illness and it deserves attention as well." - Dr. Terri Hough, OSU on pulmonary sequelae of #LongCovid.
Aug 9, 2020 9 tweets 6 min read
Young & healthy folks: I know the media has told you that you need to be safe to protect the high-risk around you from #COVID19 . But please, you must protect *yourself* also. Here's why – a thread: 6 years ago, I was a young, healthy, active person when I got a virus. 1/8
#MECFS #postCOVID