she/hers. ♿️Disabled by viral-triggered #MECFS & #Dysautonomia and related 9+years
Sep 19, 2022 • 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.
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.
A short thread 🧵 1/
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
