On #LongCOVIDAwarenessDay (March 15), NYC should recognize #LongCOVID as a historic struggle and light up its City Hall in teal! Sign petition to @mayor.nyc.gov! actionnetwork.org/petitions/pe... Join Us! 💚
(and no, i will not be fixing the typos. "brain fog" isn't a meme – it's cognitive dysfunction that limits my functionality and ability to exist & communicate)
how did i celebrate? by doing a study visit last week with the amazing UCSF LIINC team, which has been studying Long COVID since April 2020. if you are in the bay area and have ever gotten COVID, they (and we) need your help. learn more and sign up for the study here: liincstudy.org
happy anniversary to me. i ask folks who aren't affected to sit with the discomfort of knowing that your life can be taken away from you at any moment. that there are things you can to to protect yourself, and to help those who are already suffering. and that we need your solidarity more than ever.
three years in, i've been forced to reorient my life to accommodate my illnesses. but i have actively chosen to engage in the work of addressing Long COVID and its IACC siblings, and i can no longer imagine a world where this isn't my focus.
i am forever radicalized by the history i've learned, by the stories that others have shared with me, and by the deep injustice that has been happening toward sick people for generations.
what i do know is that the friendships and collaborations i've formed with other ill and disabled people have brought meaning, community, and a deep caring into my life. these relationships have brought me back from the brink. they've changed me.
where is the solidarity? where is the urgency? why is the vast majority of advocacy happening on the backs of sick people who are already suffering?
and i am one of the lucky ones! my long covid is comparatively mild, i had a financial buffer (now dwindled), i have access to healthcare, i have found a few drugs that have improved my functionality, i have so many privileges that others do not. and yet. i am miserable, limited, furious.
the lack of recognition and support i've received – from the medical system, from my friends & family, from government, from orgs that purport to support the vulnerable & suffering – is so immense as to be unbelievable.
today is the three-year anniversary of the covid infection that turned into long covid. it has completely rewritten the course of my life. it has brought me untold levels of physical suffering. it has devastated my mental health.
![“We need to maintain and build this momentum through Long COVID Awareness Day,” said Johnson, who supported the Los Angeles resolution. “This [recognition] should be a springboard.”](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:age5xvis2s2vy5qiz2tjxoc6/bafkreiffctfcki4lk3gc4omypbbbstiyjhytabzbqpytpjugjwwdlv2sti)
The city council of Los Angeles passed a resolution to recognize Long COVID Awareness Day on March 15. The resolution will also light the iconic City Hall teal.
@mileswgriffis.bsky.social was at City Hall and spoke with the advocates who made it happen: bit.ly/40BRxHT
#ShareGoodNewsToo: Los Angeles will recognize Long Covid Awareness Day (Mar 15). City Hall will be the color teal around the time of the Academy Awards!
🙏 to the orgs leading the effort, incl.
@cleanairla.bsky.social, @togetherwemask.bsky.social, @longcovidjustice.org, and @patientled.bsky.social.
BREAKING: the city of Los Angeles just officially recognized Long COVID Awareness Day, and will light City Hall teal in observation of the day on March 15.
I was at the City Hall meeting and just spoke with the advocates that made it happen. Story to come in @thesicktimes.org!
Today @thesicktimes.org: Elizabeth Yuko examines why people with Long COVID struggle to get appropriate mental health care. One big issue, she found, is that professional associations haven't offered guidance on the disease. thesicktimes.org/2026/02/24/s...
Such a cool article about “long COVID” 🦠 which has affected millions of people (many of them being young adults) and how HIV🩸 research has helped us learn more about latent viruses! #PITT_ID26
“One day soon, we’ll look back on LIINC as part of the groundswell that forever changed the understanding of conditions like #LongCovid,” @ahandvanish.bsky.social said. “The competence and credibility they have brought to the field has been rivaled by very few..." www.ucsf.edu/news/2026/01...
"Peluso also emphasized the continued need to involve patients... @ahandvanish.bsky.social, co-founder of @patientled.bsky.social, said UCSF's researchers not only.. recognize(d) that SARS-CoV-2 was causing this disorder, but they listened to patients & sought their participation in finding answers"
“In the early era of HIV, we tried single-drug therapies, but nothing worked. Two drugs, that didn’t really work. Three drugs – boom,” Deeks said. “That’s the way it worked for HIV, and that may be the way it works for #LongCovid.” www.ucsf.edu/news/2026/01...
“HIV taught us how chronic viral infections can affect the body long after initial illness, and how important it is to involve patients in that research,” said @michaelpelusomd.bsky.social. “Applying those lessons to #LongCovid has helped us accelerate discovery” www.ucsf.edu/news/2026/01...
3) Low-Dose Sirolimus (Rapamycin) for Long COVID
clinicaltrials.gov/study/NCT069...
4) NE3107 for Long COVID
clinicaltrials.gov/study/NCT068...
5) Tafenoquine for Babesiosis with Severe Fatigue
clinicaltrials.gov/study/NCT066...
1) Lumbrokinase for LC, ME/CFS, Post-Treatment Lyme Disease
clinicaltrials.gov/study/NCT065...
2) Antivirals for Long COVID
Trial will test if two repurposed HIV antivirals can reduce symptom burden in adult participants with Long Covid compared to placebo.
clinicaltrials.gov/study/NCT065...
One of the best sites running a wide variety of clinical trials for #LongCovid and other IACCs is @coresinai.bsky.social, via @putrinolab.bsky.social !
At least 5 trials are currently recruiting - see links below for eligibility!
It’s an honour to have joined the @patientled.bsky.social as a contributor. The PLRC published the first study on long COVID, establishing the phenotypic characteristics of the disease doi.org/10.1016/j.ec..., and the most cited paper on LC, outlining its biomedical features doi.org/10.1038/s415...
it me ⬇️
Would love for people with ME/CFS to check this out—as well as any researchers or healthcare providers who’ve ever worked with someone with ME/CFS!
#Medsky
Sharing for my fellow fatiguers who may be interested in participating. 😊
PLRC member Dr. Copeland has launched a research study on rest, energy, & #MECFS — open to people with ME/CFS & healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS.
More info: restandmecfs.com
“Finding a cure for long COVID needs to become a top research and health-care priority. Although clinical trials in adults are ongoing and increasing in numbers, none have yet been launched for children….This delay leaves millions of children without treatment during crucial developmental years.”
