steffi
@mecfshawaii.bsky.social
Patient Advocate / pwLC / Caregiver to pwME 🦓🦒 #ME #EDS #POTS #MCAS #LongCOVID #MEActionHawaii
Pinned
Reposted by 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
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
October 2, 2025 at 7:13 PM
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
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
Reposted by steffi
📣 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
Accelerate research for #MECFS and #LongCOVID through research participation. Join StudyME—a free, global recruitment tool—today 👉 ow.ly/Bhi350UlKlQ
#pwME #pwLC #mecfs #longcovid
The OMF StudyME Registry
Help accelerate the cure for ME/CFS, Long COVID, and related diseases through research participation
ow.ly
December 5, 2024 at 4:10 PM
📣 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
Accelerate research for #MECFS and #LongCOVID through research participation. Join StudyME—a free, global recruitment tool—today 👉 ow.ly/Bhi350UlKlQ
#pwME #pwLC #mecfs #longcovid
December 5, 2024 at 12:48 AM
Reposted by steffi
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...
January 2, 2024 at 8:06 PM
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...
Reposted by steffi
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.
December 22, 2023 at 6:29 PM
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.
Reposted by steffi
We’re so excited to be here!
October 7, 2023 at 10:36 PM
We’re so excited to be here!
Reposted by steffi
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...
October 5, 2023 at 11:42 PM
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...
Reposted by steffi
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...
"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...
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.
www.statnews.com
October 6, 2023 at 9:59 PM
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...
"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...
Reposted by steffi
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
Jen Brea will be the keynote speaker. Check it out! t.co/ODdjwBaLNi
October 2, 2023 at 11:04 PM
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
Jen Brea will be the keynote speaker. Check it out! t.co/ODdjwBaLNi
Reposted by steffi
Interview with Dr. Akiko Iwasaki on status of Long Covid research
youtu.be/QBl1ZCiNxok?...
youtu.be/QBl1ZCiNxok?...
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...
youtu.be
September 29, 2023 at 4:24 PM
Interview with Dr. Akiko Iwasaki on status of Long Covid research
youtu.be/QBl1ZCiNxok?...
youtu.be/QBl1ZCiNxok?...
Reposted by steffi
Reposted by steffi
🌟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...
🌟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...
September 28, 2023 at 10:43 AM
🌟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...
🌟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...
Reposted by steffi
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...
September 28, 2023 at 3:40 PM
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...
Reposted by steffi
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...
September 30, 2023 at 4:10 PM
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...