steffi

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

02.10.2025 19:13 — 👍 11    🔁 4    💬 0    📌 3

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...

14.12.2024 17:49 — 👍 3    🔁 0    💬 0    📌 0

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

05.12.2024 16:10 — 👍 27    🔁 12    💬 0    📌 1

go.bsky.app/SCEv4n6

05.12.2024 00:48 — 👍 10    🔁 4    💬 1    📌 1

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...

02.01.2024 20:06 — 👍 28    🔁 9    💬 1    📌 0

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.

22.12.2023 18:29 — 👍 54    🔁 9    💬 8    📌 4

We’re so excited to be here!

07.10.2023 22:36 — 👍 69    🔁 17    💬 8    📌 2

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...

05.10.2023 23:42 — 👍 64    🔁 25    💬 1    📌 3

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...

06.10.2023 21:59 — 👍 30    🔁 9    💬 0    📌 0

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

02.10.2023 23:04 — 👍 76    🔁 20    💬 4    📌 0

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

29.09.2023 16:24 — 👍 38    🔁 14    💬 0    📌 0

👩‍🎤

26.09.2023 01:48 — 👍 20    🔁 7    💬 1    📌 0

🌟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...

28.09.2023 10:43 — 👍 25    🔁 14    💬 0    📌 0

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...

28.09.2023 15:40 — 👍 224    🔁 121    💬 4    📌 18

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...

30.09.2023 16:10 — 👍 124    🔁 39    💬 21    📌 7