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RemissionBiome MECFS/LongCovid Patient-led Research Project

@remissionbiome.bsky.social
3K followers 48 following 24 posts

Project run by #RenegadeResearch @renegaderesearch.bsky.social a non-profit 501c3 decentralized org pioneering patient/caregiver led research focused on #MECFS & #LongCovid • Renegade-Research.org • RemissionBiome.org 💙 Donate now ▶️ tinyurl.com/44azdsxm

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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
María Richardson @diatoma.bsky.social · 30/03/2024
It's time to invest in biomedical research of complex chronic illness, harnessing patient expertise and community! Thanks @betsyladyzhets.bsky.social for this piece with @remissionbiome.bsky.social @meactnet.bsky.social +. Gracias for including my voice & #MillionsMissing MX. #ME #LongCovid #POTS
sciencenews.org
How patient-led research could speed up medical innovation
People with long COVID, ME/CFS and other chronic conditions are taking up science to find symptom relief and inspire new directions for professional scientists.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
María Richardson @diatoma.bsky.social · 23/02/2024
@remissionbiome.bsky.social @tessfalor.bsky.social have been talking about these issues. Here’s a recent talk by Peter Rowe on the subject. I’m wishing you good treatment and support youtu.be/WaM2mPzR64w?...
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
symptomodyssee @symptomodyssee.bsky.social · 19/02/2024
#MESpine #CCI #MCAS
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RemissionBiome MECFS/LongCovid Patient-led Research Project @remissionbiome.bsky.social · 19/02/2024
Here's the recording of the second Peter Rowe talk! He covered many topics today, including thoracic outlet syndrome, Craniocervical Instability, cervical stenosis, and MCAS. youtu.be/WaM2mPzR64w?...
youtu.be
Peter C. Rowe, MD - Part 2
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Tara Nerte @taranerte.bsky.social · 16/02/2024
Free webinar tomorrow by Dr Rowe, with Q&A. #MECFS #LongCovid #CCI #AAI #MEspine #MCAS #hEDS #POTS #TOS
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Tara Nerte @taranerte.bsky.social · 16/02/2024
Recording of Part 1 here:
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RemissionBiome MECFS/LongCovid Patient-led Research Project @remissionbiome.bsky.social · 15/02/2024
Happening tomorrow at 2pm EST! Register here: us06web.zoom.us/webinar/regi... (If you already registered for the 1st one, you don't have to register again.)
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RemissionBiome MECFS/LongCovid Patient-led Research Project @remissionbiome.bsky.social · 15/02/2024
Part 2 - Peter Rowe, MD Feb 16 at 2pm EST Dr. Rowe will cover: ✨Bio-mechanical issues including thoracic outlet syndrome ✨Neuro-anatomic problems including cervical stenosis & CCI ✨Mast Cell Activation Register here: us06web.zoom.us/webinar/regi...
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
The Nicotine Test -- Citizen Science Project @thenicotinetest.bsky.social · 23/12/2023
Want to understand why and how many people are using nicotine patches for #LongCovid and #MECFS? Start here! Linktr.ee/thenicotinetest
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RemissionBiome MECFS/LongCovid Patient-led Research Project @remissionbiome.bsky.social · 10/02/2024
Register to join us next week, if you didn't register for the first one: us06web.zoom.us/webinar/regi... (If you already registered for the first one you don't have to register again. It's the same link.)
us06web.zoom.us
Welcome! You are invited to join a webinar: Peter Rowe Renegade Research/RemissionBiome talks. After registering, you will receive a confirmation email about joining the webinar.
Welcome! You are invited to join a webinar: Peter Rowe Renegade Research/RemissionBiome talks. After registering, you will receive a confirmation email about joining the webinar.
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RemissionBiome MECFS/LongCovid Patient-led Research Project @remissionbiome.bsky.social · 10/02/2024
Watch the recording of Dr. Peter Rowe's talk that he just did for the community: youtu.be/hTNpWjbVhsY?... It was fantastic! We can't wait to have him back next week and for a clinical roundtable in the future.
youtu.be
Peter C. Rowe, MD - orthostatic intolerance, brain blood flow, and venous congestion in ME/CFS
Presentation to Renegade Research on February 9, 2024
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RemissionBiome MECFS/LongCovid Patient-led Research Project @remissionbiome.bsky.social · 09/02/2024
Reminder that part 1 of Dr. Rowe's talk is today at 2pm EST! Sign up link 👇 us06web.zoom.us/webinar/regi... #MECFS #LongCOVID #CCI #AAI #MEspine #MCAS #hEDS #POTS #TOS
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Tara Nerte @taranerte.bsky.social · 22/11/2023
RemissionBiome20 gets you 20% off... and Healthy Gut donates 10% to help fund @remissionbiome.bsky.social studies. 😀 Thanks for "oversharing" - and Big Congratulations On Your Abnormal Test Results! 🎉
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 14/11/2023
Just called & emailed my reps asking for their support of a #LongCovidMoonshot 🚀🌝 Have you made your calls yet today? Call guide here: longcovidmoonshot.com
Colorful graphic of the moon that says “moonshot for Long Covid: Demand long Covid funding! 20 million Americans. Zero treatments. Call your reps November 14.”
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Tess Falor, Ph.D. @tessfalor.bsky.social · 11/11/2023
During my 2009 @remissionbiome.bsky.social event, I was shocked to realize how sick I had really been. I had gotten so used to it that I didn't even know how bad it was until it went away. I started to think that EVERYONE was probably actually sick, but was just used to it.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Tess Falor, Ph.D. @tessfalor.bsky.social · 11/11/2023
The @remissionbiome.bsky.social #Renegade50 are spread around the US, Canada, Mexico, EU, and UK. For Biome2 we have people lined up in Australia, Finland, Iceland, & Bali + others in the running in India, Lithuania, Trinidad & Tobago, South Africa, Indonesia, Japan, Brazil, & many more.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 15/10/2023
The Microbiome's Impact on Health - my interview with Dr. Alessio Fasano ancestralhealth.substack.com/p/the-microb...
ancestralhealth.substack.com
The Microbiome's Impact on Health
Listen now | With Alessio Fasano, MD
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 15/10/2023
Community engagement makes research better, a win for science! www.nature.com/articles/s41...
nature.com
Privilege and prejudice must be recognized for equitable research partnerships - Nature Medicine
Not involving communities throughout the research process may be attributable to prejudice and a failure to recognize privilege. The result is a loss for all involved.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 15/10/2023
@lifeanalytics.bsky.social machine learning for the win! www.thecrimson.com/article/2023...
thecrimson.com
Harvard Medical School and Oxford Researchers Develop AI Tool to Predict Virus Evolution | News | Th...
Harvard Medical School and Oxford Researchers Develop AI Tool to Predict Virus Evolution | News | The Harvard Crimson
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 15/10/2023
Not protecting the most vulnerable is criminal. We know that cancer patients are at greater risk of contracting and complications from ID. How can we end this madness?
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
In a world where you can be anything: Be kind, be honest, be in service of others. We only live once & don't take anything with us. At the end of my journey, I want to have been loved & trusted. Today, I want laugh, find joy in the everyday things & never lose my humanity!!!
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
Throughout my illness, I have gone through financial devastation from medical bills and not being able to work. There were many times when I saw people having access to trx I couldn't even think of having. I clawed myself out some of the worst times by 1/
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
β-Caryophyllene, A Natural Dietary CB2 Receptor Selective Cannabinoid can be a Candidate to Target the Trinity of Infection, Immunity, and Inflammation in COVID-19 - PMC www.ncbi.nlm.nih.gov/pmc/articles...
ncbi.nlm.nih.gov
β-Caryophyllene, A Natural Dietary CB2 Receptor Selective Cannabinoid can be a Candidate to Target ...
Coronavirus disease (COVID-19), caused by novel severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), is an ongoing pandemic and presents a public health emergency. It has affected millions of...
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
My very first conversation with @tessfalor.bsky.social about what has become @remissionbiome.bsky.social - I told her right away “I’ll do it ”. Then my abx ready in January 2023 to get started.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
Frontiers | Reaction of Human Monoclonal Antibodies to SARS-CoV-2 Proteins With Tissue Antigens: Implications for Autoimmune Diseases www.frontiersin.org/articles/10....
frontiersin.org
Reaction of Human Monoclonal Antibodies to SARS-CoV-2 Proteins With Tissue Antigens: Implications fo...
We sought to determine whether immune reactivity occurs between anti-SARS-CoV-2 protein antibodies and human tissue antigens, and whether molecular mimicry between COVID-19 viral proteins and human ti...
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
phys.org/news/2023-11...
phys.org
Researchers identify bacterial mechanism for vitamin B12 uptake
A team of scientists led by Dr. Ulrich Kleinekathöfer, professor of Theoretical Physics at Constructor University in Bremen, has now discovered how B12 is absorbed by certain intestinal bacteria. Pub...
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
Excellent 🧵 about CDC's new page on "chronic symptoms following infections" www.cdc.gov/ncezid/what-...
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
The weight of a pineapple can certainly feel like the weight of the galaxy www.sciencealert.com/the-immune-s...
sciencealert.com
The Immune System Weighs The Same as a Pineapple, Study Finds
Depending on the person.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
My episode of www.ancestralhealth.org/ today podcast with @jenbrea.bsky.social is now out. Listen and subscribe on Substack ancestralhealth.substack.com/p/mecfs-and-...
ancestralhealth.substack.com
ME/CFS and Long Covid
Listen now (91 mins) | With Jen Brea
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
www.livescience.com/health/scien...
livescience.com
Scientists unveil 'atlas' of the gut microbiome
A new computational tool has allowed scientists to map how microbes interact in the gut, and it could one day be used to develop more-targeted therapies for diseases.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
For The First Time, Scientists Show Structural, Brain-Wide Changes During Menstruation : ScienceAlert www.sciencealert.com/for-the-firs...
sciencealert.com
For The First Time, Scientists Show Structural, Brain-Wide Changes During Menstruation
Period brain is real.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023
Targeting exponential decay of suffering around the world. The conditions brought us together, but we have built a community that is focused on what we can accomplish together. We laugh, cry, celebrate, comfort and hold onto each other as a beautiful biome!
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Jodi Ettenberg @legalnomads.com · 09/11/2023
Happy to share that I’ve won a 2023 health impact award, alongside a list of truly amazing (and way more well-known!) people. It’s an honour to be recognized for my writing & the awareness I’ve tried to raise for my conditions. www.verywellhealth.com/impact-award...
verywellhealth.com
The Verywell Health Impact Awards
The Verywell Health Impact Awards celebrates people who use their experience living with diseases and conditions to advocate for others.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Tara Nerte @taranerte.bsky.social · 02/11/2023
We beg for healthcare. In Canada we get a cold shoulder & the “offer” of MAID. Help is coming—from *within* the community. What happens when some geniuses with #MECFS trigger remission, then support a bunch of renegades through the same protocol? We’re finding out. 💪 linktr.ee/remissionbiome ⤵️
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RemissionBiome MECFS/LongCovid Patient-led Research Project @remissionbiome.bsky.social · 08/11/2023
And, she's @drt.bsky.social's sister. Welcome, Tanya. So happy to have you in the team
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RemissionBiome MECFS/LongCovid Patient-led Research Project @remissionbiome.bsky.social · 15/10/2023
Our own Rachel Horton interviewed with one of the youngest participants of #Renegade50. Thank you so much for sharing your story, Adrienne. We are so happy to have you in the @remissionbiome.bsky.social team and looking forward to seeing you playing bassoon again. www.youtube.com/watch?v=ieMG...
youtube.com
Adrienne Interview
OUR PROJECT: https://remissionbiome.org/SOCIALS:Tamara: https://twitter.com/chydorinaTess: https://twitter.com/tessfalorRemissionBiome: https://twitter.com/r...
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Tess Falor, Ph.D. @tessfalor.bsky.social · 15/10/2023
We're almost up to the anniversary of @remissionbiome.bsky.social starting to take off! The hashtag #RemissionBiome didn't even exist this time last year.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 15/10/2023
Brain fog in long COVID: A glutamatergic hypothesis with astrocyte dysfunction. ⁦Katrin Boniface did an amazing presentation on glutamate at the ⁦ @remissionbiome.bsky.social science round table. She’s been up to this for a while. www.sciencedirect.com/science/arti...
sciencedirect.com
Brain fog in long COVID: A glutamatergic hypothesis with astrocyte dysfunction accounting for brain ...
Brain [18F]FDG-PET scans have revealed a glucose hypometabolic pattern in patients with long COVID. This hypometabolism might reflect primary astrocyt…
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Tess Falor, Ph.D. @tessfalor.bsky.social · 10/10/2023
Yay! I can't wait to try Visible Health Plus.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 10/10/2023
If you are an individual WITHOUT #MECFS #LongCovid or any other #postinfectious condition, generally relatively healthy and have a Biomesight result in the last 6 months that you’d be willing to share with @remissionbiome.bsky.social please contact me.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 10/10/2023
phys.org/news/2023-10...
phys.org
Epigenetic regulator MOF drives mitochondrial metabolism, new study shows
The intricate control of cellular metabolism relies on the coordinated and harmonious interplay between the nucleus and mitochondria. On the one hand, mitochondria are the hub for the production of es...
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 10/10/2023
medicalxpress.com/news/2022-05...
medicalxpress.com
Magnetic resonance imaging shows brain inflammation in vivo for the first time
Research by Dr. Silvia de Santis and Dr. Santiago Canals, both from the Institute of Neurosciences UMH-CSIC (Alicante, Spain), has made it possible to visualize for the first time and in great detail ...
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 10/10/2023
"The degree to which even subtle disease-associated perturbations in IDR sequences altered the function of this major chromatin remodeler along the genome was surprising, and led us to explore the basis of the changes down to amino acid grammar," phys.org/news/2023-10...
phys.org
Research reveals overlooked parts of proteins as critical to fundamental functions of life
According to textbooks, proteins work by folding into stable 3D shapes that, like Lego blocks, precisely fit with other biomolecules.
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Isabel Ramirez-Burnett @isabelrb.bsky.social · 08/10/2023
Can't wait to share this interview!!!!
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
Tess Falor, Ph.D. @tessfalor.bsky.social · 07/10/2023
Oh, we realize. 😁
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Reposted by RemissionBiome MECFS/LongCovid Patient-led Research Project
María Richardson @diatoma.bsky.social · 07/10/2023
Videochatting with my beloved (and with my partner) because I'm at my mom's place in a different city getting ready for @remissionbiome.bsky.social. I told them about the Prodrome news and they're very excited for us 🪅.
Screenshot showing an orange tabby up close. I (white woman with dark hair) am in a smaller rectangle, leaning on cushions and smiling.
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