bit.ly/4cwatPa

Last month I had the galactic honor of a lifetime to share remarks at Alice Wong's Celebration of Life. Today @thesicktimes.org published an extended version—which share how @sfdirewolf.bsky.social wielded Disability Justice to deliver #LongCovid advocacy's best moment (yet). /1

From @cortjohnson.bsky.social:

“The free @rthm.bsky.social & @patientled.bsky.social #LongCovid Treatment Guide is one of those publications that makes you wonder, ‘Why hasn’t this been done before?’ A succinct, evidence-based guide drs can quickly turn to learn about LC treatments.”

A collage of two photos of myself. On the left is a black and white photo of me arriving to the beach after a run with a peace sign. This is the last run I have been on which happened in 2020 6 years ago today — on the right is a photo of myself on a typical day recovering from minor exertion with an eye mask and oxygen concentrator on.

6 years ago today I went on my last run (pic left) — today I’m 36 and I’ve spent my entire 30’s with #LongCovid struggling to walk up and down the block, or work more than 1-2 hours a day.

Heres 4 things I never thought I’d lose at this age:

A new aid in the doctor’s office: Introducing the Long COVID Treatment Guide - The Sick Times Too often, people with Long COVID hear that since clinical research is still underway, not much can be done for them at this point. We at the Patient-Led Research Collaborative and RTHM Clinic reject ...

Today @thesicktimes.org: We're excited to help introduce the new PLRC-RTHM Long COVID Treatment Guide, with an op-ed by @leticiasaurus.bsky.social and @jencurtinmd.bsky.social! thesicktimes.org/2026/03/12/a...

Long COVID Treatment Guide An evidence-supported guide covering treatments addressing multiple Long COVID symptoms & mechanisms — focused on prescription medication, with a limited set of supplements, OTC medications, procedure...

We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @rthm.bsky.social to help patients & providers explore treatment options together.

The guide focuses on 24 medications, but includes a few other interventions for breadth /1

Big announcement 📣

RTHM’s new HIPAA-compliant intelligence platform brings your health story into focus, pulling together records, labs, diagnoses, and symptoms to transform complex data into clarity and suggest the best next steps with your care team!

Start today (it’s free!): rthm.com

With no approved treatments and little support, people with Long COVID turn to online drug markets - The Sick Times With no approved treatments, lack of support, and stigma against the disease, many people with Long COVID are using overseas pharmacies to source medications. Some of these treatments are widely used ...

thesicktimes.org/2024/12/12/w...

The OMF StudyME Registry Help accelerate the cure for ME/CFS, Long COVID, and related diseases through research participation

📣 OMF's StudyME Registry Has Over 11,000 Participants! 🎉 Will You Help Us Reach 15,000?

Accelerate research for #MECFS and #LongCOVID through research participation. Join StudyME—a free, global recruitment tool—today 👉 ow.ly/Bhi350UlKlQ

#pwME #pwLC #mecfs #longcovid

go.bsky.app/SCEv4n6

Reposting with correct day: I'm thrilled to be speaking on FRIDAY at the NIH ME/CFS Research Roadmap workshop on Less-Studied Pathologies, on craniocervical instability and tethered cord and the interrelationship between comorbidities. Please come. event.roseliassociates.com/me-cfs-resea...

Beth Mazur smiling a big beautiful smile

It is with deep sadness that we share with you that we lost one of our heroes and champions of ME yesterday. Beth Mazur passed away after battling ME for 15 years. She was a selfless beacon of hope & light in our community. She demonstrated an unwavering commitment to the cause.

We’re so excited to be here!

For anyone interested in complex chronic illness, I highly recommend attending the FREE PolyBio Fall online Symposium on Friday Oct 20 from 12:30 - 5 pm ET. You can check out the speakers and talks here, and register: polybio.org/polybio-fall...

Does the risk of getting long Covid increase each time you get reinfected? "It's very clear in our data that reinfection contributes additional risk of long Covid," says epidemiologist Ziyad Al-Aly.

Good data is hard to get.

"Anecdotally, from the clinics we know that some people come back and say, 'I feel better' or 'I feel I improved.'

If you dig a little bit deeper, they did not get back to their baseline; they adjusted their baseline.''

www.statnews.com/2023/09/20/d...

I'm excited to be speaking at UCLA's conference "Canary Knowledge: Chronic Fatigue, Chemical Sensitivities and the Limits of Medicine" on Nov 17. It's free and hybrid.
Jen Brea will be the keynote speaker. Check it out! t.co/ODdjwBaLNi

How Do We Speed Up Long Covid Research? | With Prof. Akiko Iwasaki In this final film of the series with Professor Akiko Iwasaki, we discuss the challenges of the research landscape for Long Covid, and how we can go about ge...

Interview with Dr. Akiko Iwasaki on status of Long Covid research
youtu.be/QBl1ZCiNxok?...

👩‍🎤

🌟Excellent article in Bloomberg financial press on the reality of Long Covid
🌟We know it's real but it's finally good to see the narrative take hold in the media.
🌟Even though we've seen the counter attack from the minimisers this week.
🌟They must be worried!
www.bloomberg.com/opinion/arti...

New findings that SARS-CoV-2 can directly infect and replicate in coronary arteries, promoting plaque inflammation atherosclerosis, and cardiovascular risk nature.com/articles/s44...

Fabulous start to the project of migrating the chronic illness community over here! In the first 12 hours of this form being up, I got 138 donated Blue Sky codes to chronically ill Twitter refugees, with 37 more people in the queue. Please keep donating! forms.gle/tHNTyxG31uPQ...