alright I want to talk about the spectrum of severity with regards to #LongCovid, as it pertains to claims we are over-counting cases by including people like me...who are not severely disabled by the disease. A thread 1/9 It's important for studies to ask questions about severity, so we can understand the level of support diff patients need. But, we also need to understand that this disease evolves and we don't always know if a patient will get worse over time AND external factors play a part 2/9

good morning! cases are surging again, which means new #LongCovid patients will soon be emerging (trust me, I've seen this episode before). It seems like a good time to recap some resources for media covering Long COVID... 1) The source list: @betsyladyzhets and I put together a source list w/ #LongCovid experts + patients (and patients who are experts, ofc) longcovidsourcelist.notion.site/longcovidsourc…

this tweet has info on how to submit yourself as a source for the list (which we update):

https://twitter.com/fi_lowenstein/status/1456647111156535302?s=20&t=FFD1bbDLiFA8rApXemI7iA

Watching new C19 infections turn into #LongCovid this week on Twitter has been difficult. I'm still shocked at how little most people know. Luckily, info on this illness exists, thanks to those who experienced it in earlier waves. I want to share some of that first-hand guidance: In August, 2020 @theheatherhogan wrote about contracting C19 and being diagnosed with dysautonomia – a common diagnosis for a lot of folks with #LongCovid. She detailed her story in @autostraddle: autostraddle.com/the-soft-butch…

there are some guides circulating on what to do if you are infected with COVID. many of them are helpful, but few address the possibility of #LongCovid. So, I figured I'd share some tips for the acute phase of a COVID infection that account for potential long-term symptoms 1) test early, test often: accessing testing can be hard af (especially during a surge + holidays, and especially if you're sick and struggling to drive and navigate bureaucracy). As tempting as it may be to say ok I'm symptomatic, I'm just gonna stay home, no need to test...

woke up today in LA w the goal of getting tested (to be safe, no known exposure/symptoms). I've spent >half my day looking for free testing sites nearby, w/o luck. I'm insured, have flex work hours, and am an expert on COVID. if it's this hard for me, there's a big fucking issue the LA county website mainly directs to CVS stores (none of which have available appointments). when I went to the CVS near me to ask, I was told to log on at midnight tonight when appointments for thurs would become available (for about an hour before they are all booked).

One year ago today, I developed my first symptoms of COVID-19. Over the past 12 months, I have battled issues ranging from severe GI issues to debilitating menstrual periods, started the @itsbodypolitic support group, and have helped to shape the media narrative around #LongCovid some key takeaways from this past year:

1. I am strong af. But, I can't do everything alone. There is power in community, and strength in asking for help.

2. Economic and white privilege played an enormous role in my experience being easier than many other patients'...

here's an end of year writing recap that doubles as a resource list! bc when I got COVID in March, I pivoted to writing almost exclusively about COVID patient issues, starting two days after I was discharged from Mt. Sinai, with this @nytopinion piece: nytimes.com/2020/03/23/opi… On April 13, I wrote a follow-up in @nytopinion. It's one of the first reported pieces on what we now call #LongCovid, and it connected me with many of you...nytimes.com/2020/04/13/opi…