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May 16 • 7 tweets • 5 min read
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):
2) The comprehensive guide: I spent several months last summer working on a guide for press covering #LongCovid for @itsbodypolitic. I spoke with veteran health journalists and patient-advocates to better understand how media coverage can improve: drive.google.com/file/d/1_H4Yd-…
3) The highlights: That guide I posted above is long! And journalists are often short on time – so, I highlighted some key takeaways from my work on this guide for @ReportingHealth for those looking for a quick overview: centerforhealthjournalism.org/resources/less…
4) Tips on interviewing Covid-19 patients: In summer 2020, I wrote an article for @CJR recapping best practices for interviewing sources with Covid-19 and #LongCovid. I think it remains useful. cjr.org/covering_the_p…
5) Tips on covering "contested illnesses:" If you made it through the above articles, you know #LongCovid is not entirely mysterious or unprecedented. @julierehmeyer, a journalist living with #MECFS has written an excellent guide for @Open_Notebook: theopennotebook.com/2021/01/26/how…
Finally, if you have #LongCovid, the below thread highlights several well-moderated private support groups that have helped many long-haulers. Journalists writing about patient-advocacy may also want to start by contacting the mods of these groups:

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More from @fi_lowenstein

Fiona Lowenstein Profile picture
Jan 4
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…
Also in August 2020, @mileswgriffis wrote a beautiful essay in @adventurevida about navigating the uncertainty of #LongCovid: adventure-journal.com/2020/08/living…. This article delves into fatigue, isolation, and cycling symptoms.
Read 11 tweets
Fiona Lowenstein Profile picture
Dec 22, 2021
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...
a positive COVID test result serves as a COVID diagnosis for many clinicians, and will likely make it MUCH easier to access care for long-term symptoms should you develop them. patients w/o initial tests have experienced more gaslighting from clinicians⬇️ businessinsider.com/long-covid-pat…
Read 9 tweets
Fiona Lowenstein Profile picture
Dec 21, 2021
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).
I'm aware of + continuing to research a variety of options (and will update here and on IG once I figure out a sustainable solution for weekly, free, reliable PCR testing in LA), but I feel a sense of overwhelming despair rn at how many deterrents there are to getting tested
Read 7 tweets
Fiona Lowenstein Profile picture
Mar 13, 2021
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'...
I was mostly able to access care when I needed it. I was able to quit paid work and live off my savings when I needed enormous amounts of rest. I credit my (mostly full) recovery to that time I spent resting and pacing.

3. Recovery is not linear...
Read 6 tweets
Fiona Lowenstein Profile picture
Dec 22, 2020
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…
around that same time @rabbisabbi and I co-wrote a piece for @itsbodypolitic about how to support a friend with COVID. Sadly, still very relevant today: wearebodypolitic.com/bodytype/2020/…
Read 11 tweets

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