Thread by @itsbodypolitic

Today we want to thank all the organizations in the #LongCovid, Covid-19, and disability justice space that we have worked with. We are grateful for the solidarity that exists in this movement + encourage our followers to show the groups listed below some support! 1/25

first up, @patientled: born from our support group, this patient-led, diverse, all-female leadership team was the first to study #LongCovid, with their work recognized by @NIHDirector. All the researchers are people with Long Covid and they emphasize patient privacy. 2/25

next, @MarkedByCovid: as leaders in the grief space, this org provides resources to those who have lost loved ones to Covid-19 and trains their members as advocates. Founded by @kdurquiza, this org centers and is led by those most impacted. 3/25

Another partner is @C19LH_Advocacy. The Covid-19 Longhauler Advocacy Project was founded by #LongCovid patient Karyn Bishof, an Indigenous woman, single mother, first responder and essential worker. They run a support group on Facebook + participate heavily in advocacy work 4/25

Another group we work with is Long Haul COVID Fighters, a private Facebook group for people with #LongCovid. It's run by patients @katemeredithp and @Amy_Ant (who coined the term "long hauler!"). This group focuses on emotional support and advocacy. longhaulcovid.com 5/25

We want to specifically recognize the many Black advocates working in this space, both formally in groups like Black Covid-19 Survivors (facebook.com/groups/6440269…) and @COVIDBLK and behind the scenes supporting one another... 6/25

We’re honored to have worked with folks like @chiluvs1 who has been a leader in this space and are eager to partner with more health equity orgs and orgs centering Black voices in COVID advocacy (see the end of this thread for info on ways to connect) 7/25

next, @MEActNet: founded by @jenbrea, members of this advocacy organization have generously mentored us and helped us build solidarity with #pwME. They train and support a global network of patient advocates, run support groups, and fight for recognition + research 8/25

There are many in the #MECFS community that have supported and mentored us – @exceedhergrasp1 @TheCrankyQueer and @minadjenkins are just a few – we see the goals of our communities as linked and are grateful to all those who educated us on this early on in the pandemic! 9/25

We also work with many international advocates. In Thailand, @zerocovidthai has been working fiercely to raise awareness for the country's first significant wave of #LongCovid patients this summer. 10/25

In Indonesia, @jtuvanyx has worked tirelessly to educate healthcare professionals and others after contracting #LongCovid himself. In Brazil, #LongCovid patient @leticiasaurus has been raising awareness via @longcovacademia 11/25

In the UK, we've collaborated with @LongCovidSOS (another patient-led org born in Body Politic!), who organized the first international patient advocate meeting with the @WHO on #LongCovid. Also in the UK is @stillillcorona1, an amazing advocate and artist! 12/25

Another UK patient-led #LongCovid group we support is Long COVID Support Group, run by @ClaireHastie1 @Know_HG and other patients. Their private group is on Facebook w/ 44.4K patient-only members! facebook.com/groups/longcov… They have also published patient-led research 13/25

A few others we've enjoyed working with: @UTc19LongHaul, a patient-led group in Utah; US based advocate @rubyslippahs; @LongCOVIDPhysio, a patient-led association of Physiotherapists with #LongCovid; @LongCovidKids; and the Canadian patient-led group, @longcovidcanada 14/25

In Finland, #LongCovid patient @apuakoronaan has been working to raise awareness since spring 2020! In India, #LongCovid patient @priyakamal recently launched a support group for Covid-19 survivors t.me/joinchat/FP2cR…. We've been excited to be able to learn from both 15/25

In France @apresj20 is a patient-led #LongCovid org that has been doing great advocacy work. Led by @Food_reward, @Ra2myl, & others, this group attended that first WHO meeting last summer and we've stayed in touch ever since! We also recommend @cpersistente in Spain! 16/25

In Italy, @longcoviditalia, @martaesperti, & @elisaperego78 are #LongCovid patients advocating for more research and recognition since the start of the pandemic. Elisa also coined the term #LongCovid, and they've all been influential on social media + in press! 17/25

We also have worked with and are deeply grateful for @Dr2NisreenAlwan's leadership. We want to thank her, @elisaperego78, @felicitycallard, @DocAmali and others who have published important works on the history of the #LongCovid patient movement. ncbi.nlm.nih.gov/pmc/articles/P… 18/25

We also want to recognize the Japanese #LongCovid patients who run their own channel in our support group (we are happy to host other international groups who can moderate their own channel, too!) and our Spanish language channel moderator Angelly who also runs @peru_covid 19/25

Note: we also work with many, many partners in policy, science + medicine. We're grateful for these ongoing relationships + appreciate their allyship and recognition of the value of patients’ lived experience. But today we wanted to show our patient groups some extra love!
20/25

Most of these orgs have been bypassed for significant funding and many are run by chronically ill volunteers, limiting our reach and ability to engage in advocacy opportunities. But, we hope those in power will begin to fund Covid-19 orgs led by those most impacted. 21/25

In the meantime, most of us are accepting contributions via GFMs, Patreon, Paypal etc. So, orgs and folks tagged feel free to drop links below indicating how individuals can support you! We'll start:
patreon.com/itsbodypolitic/

gofundme.com/f/fuav69-body-…

22/25

Anyone wanting to partner with us can reach out at [e-mail]. We're also interested in adding more #LongCovid patients to our lists of patient sources for journalists – especially BIPOC, low-income folks + disabled folks. Reach out at [e-mail] 23/25

When reaching out, tell us how you want to work together and more about what you do! And don't be concerned if we take a few days to reply (most of us are chronically ill and working as volunteers) – it doesn't mean we're not interested 🧡 24/25

Finally, you can sign up for our private, patient & caregiver only support group on @SlackHQ here: docs.google.com/forms/d/e/1FAI…

Once again it takes us a few days to onboard folks, but any inquiries about getting into the group can be directed to [e-mail] 25/25