Project run by @renegaderes, a non-profit 501c3 focused on #MECFS & #LongCovid • https://xitter.cf/t.co/kbmqa2yImN • https://xitter.cf/t.co/IkTfALVBWC💙 Donate now ▶️ https://xitter.cf/t.co/yNyiFapV80
Joined December 2022
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RemissionBiome MECFS/LongCovid Patient-Led Science retweeted
Excited to have amatica attending @RenegadeRes again.
Nick will be presenting initial findings from our RNA dataset containing 159 patients and 85 control.
I will be in attendance, but not presenting, as I’m in a slight flare preventing long form calls.
Register below!
We're excited to host @amaticahealth @NBoydGibbins for a research roundtable on July 23 at noon!
Amatica's RNA Sequencing Research
Amatica has one of the largest patient-driven RNA datasets in ME/CFS & Long COVID (159 disease vs 85 controls). Nick Boyd-Gibbins will share what the data is starting to reveal.
RemissionBiome MECFS/LongCovid Patient-Led Science retweeted
This will feature @IsabelRamirezRD, @tessfalor, @sunsopeningband (University of the Pacific), Chris Armstrong (Director of OMF's Melbourne ME/CFS Collaboration) and Danielle Meadows (Vice President of Research Programs & Operations at OMF) with discussion with the audience.
We're hosting a live session with @OpenMedF on July 15 at 5pm ET focused on crashes & post-exertional symptom worsening (PEM/PESE/PENE) in ME/CFS.
These were top priorities identified by the CTN Lite Patient & Caregiver Survey.
RemissionBiome MECFS/LongCovid Patient-Led Science retweeted
Huge thanks to @liamsLCjourney and his friend for dedicating this donation to our "Innovation Inn" project! 🙏
This donation will allow us to rent Moxy sensors, which measure oxygen in muscles. (Ht to @ahandvanish for telling me about them.)
I have a combo of your 2nd and 3rd options where that funding could make a big difference.
@RenegadeRes is running a small project quantifying PEM at home the first week of August. We are choosing to do a small number of participants with as much testing as possible. Results from it will inform the design of larger studies with more targeted testing and more participants. Funding additional testing for this small project has the potential to find important clues that we could miss.
We are doing this with an $8k micro grant from @VitalikButerin, so the $625 would add substantially.
It could fund an ELISA kit to test something in 96 samples or allow us to rent Moxy sensors for everyone. I would lean toward the Moxy sensors, because @ahandvanish just told me about them and thinks they have great potential to give good info during PEM. We don't have room in the budget for them right now. If you can think of a specific ELISA kit you could choose to fund that, though.
If you want to know more, you can DM me!
moxymonitor.com/product/moxy…
RemissionBiome MECFS/LongCovid Patient-Led Science retweeted
We're hosting a live session with @OpenMedF on July 15 at 5pm ET focused on crashes & post-exertional symptom worsening (PEM/PESE/PENE) in ME/CFS.
These were top priorities identified by the CTN Lite Patient & Caregiver Survey.
RemissionBiome MECFS/LongCovid Patient-Led Science retweeted
"My brain hasn't felt like this in a very long time and it's incredible and I don't want it to go away." 😭
This is the response that many people with Craniocervical Instability (CCI) have when their head is lifted with invasive cervical traction (ICT). Many then have the same experience with cervical fusion surgery and many who meet the criteria for ME/CFS go into total remission.
There are hardly any surgeons who have the experience to do this surgery, though, and surgery doesn't work for everyone. It makes some worse. It's risky.
I don't think that CCI and/or mechanical issues are causing all cases of ME/CFS. It needs to be studied more!
We need to figure out how to prevent this altogether, how to stop it from getting worse, how to treat it with non-surgical options.
I think that instant improvement of symptoms in ICT is also a clue about pathophysiology of ME/CFS.
I hope that our paper will move the needle forward.
xitter.cf/RenegadeRes/status/199…
Help us reach out goals this #GivingTuesday2025
1. It's here...... #GivingTuesday2025 ! In the next 24 hours help us raise 24K to support our mission of pioneering accessible, patient-led efforts to uncover scientific insights and improve overall quality of life for our global MECFS & Long Covid community
Help out parent organization @RenegadeRes fundraise for the holidays without additional cost
Reminder: This Friday at 2:00pm ET (USA) - invite your providers and share on your networks so more clinicians can learn how this intervention is helping patients
New Medical Coaching and Consulting for patients with MECFS and long covid started by @RenegadeRes
Watch the recording of the info session youtu.be/r_N9apL7k1E?si=umqq…
Fill out the interest form forms.gle/AQx41Y7NYWvi9VLp8
or send questions [email protected]
Reminder that our @RenegadeRes parent organization has started a Medical Coaching and Consulting for patients with MECFS and long covid.
Watch the recording of the info session youtu.be/r_N9apL7k1E?si=umqq…
Send questions to [email protected]
RemissionBiome MECFS/LongCovid Patient-Led Science retweeted
I'm looking forward to this! I've been chatting with Alex and he's brilliant. I have his tech ready to start testing on Monday when I get back from vacation.
We hope to see you in our upcoming webinar with Alex to learn more about the technology that has been developed for home use.
For more webinar information and how to register, visit: braininflammation.org/brain-…
ALT ID: Infographic showing that Alex Stenzler will be presenting his companies CO2 rebreather technology in a free webinar on August 7th at 11 am pacific standard time.
RemissionBiome MECFS/LongCovid Patient-Led Science retweeted
Many clinical roads and biochemical / neuro paths lead to the brainstem.
🔔Lots going on with nerves in the brainstem (that can be disrupted by inflammation and limited blood flow).
AUTOANTIBODIES found in the BRAINSTEM area, the locus coeruleus, which regulates alertness, stress response, attention, SLEEP-WAKE CYCLES, PAIN, and COGNITION . It’s also one of the first regions affected in Alzheimer’s and Parkinson’s.
Slide @VirusesImmunity, 31 July 2025
If you follow us for the RemissionBiome project, you will want to follow our parent organization @RenegadeRes to follow additional details on RB and also follow all of our projects!
RemissionBiome MECFS/LongCovid Patient-Led Science retweeted
Recording of our Medical Coaching and Consulting Community Briefing is now posted to our YT channel. See link in comment.
If you didn't know, Remission Biome is a project of @RenegadeRes. This announcement highlights our new Medical Coaching and Consulting for patients with MECFS and Long Covid. Join us Friday for more details and fill out the interest form in thread.
RemissionBiome MECFS/LongCovid Patient-Led Science retweeted
Pacing isn’t curative but it’s a necessary skill for people living with energy limiting conditions. ME and ME-like conditions that are associated with known deficits in aerobic metabolism. Obviously I teach pacing and that’s centered on patients’ specific self-identified needs.
RemissionBiome MECFS/LongCovid Patient-Led Science retweeted
✅️ Accelerate Research + Care! 🔬 #MECFS #longCOVID
Our work impacts the lives of many! Patients + caregivers are listened to and empowered. (campaign link below)
ALT Renegade Research logo white on black background