Isabel Ramirez-Burnett
@isabelrb.bsky.social
2.7K followers 520 following 200 posts
CEO | Renegade Research | Project Director of Remission Biome NBC-HWC, AIP-C @remissionbiome.bsky.social
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Micro-dosing GLP-1/GIP RA Tx in ME/CFS & Long Covid with
@kaufmanmd.bsky.social @ruhoy.bsky.social &
Tania Dempsey, MD.

2 pm ET USA, Friday, Oct 17, 2025

A Clinician's Roundtable by @renegaderesearch.bsky.social

Recording posted to YouTube soon.

us06web.zoom.us/webinar/regi...
#MedSky
3. Mine are with medications that help my autonomic function

1. 58
2. 64
3. 10-15
4. Night time 30 (oura) day time 41 (polar H10 w/elite HRV)
5. Function level -mild (can do most things)
Symptom level - moderate (with meds and supps)
2.
1. Average HR while sleeping
2. Average HR daytime while awake & sitting
3.average HR increase from laying down to standing
4. Average HRV
5. Severity level

My answer in the next comment
1. This is difficult to do on an standard poll but curious where everyone sits if you are willing to answer the following questions in the comments.

Please specify if your numbers are with it without medication that stabilize your HR.
Reposted by Isabel Ramirez-Burnett
The petition for appropriate care for Sanne is past 2,500 sig. Let’s join #pwME #MEAwareness #MECFS #GreatestMEdicalScandal forces 🙏🏻.
We can sign from anywhere in the 🌎
@meactnet.bsky.social @openmedf.bsky.social @patientled.bsky.social

The text reads “University hospitals refuse ..
1. Have you seen our
New Medical Coaching and Consulting for patients with MECFS and long covid started by @renegaderesearch.bsky.social

Links in
comment
About to season my shoulder like I season my lamb chops 🤣

Making an oil based poultice with Rosemary, thyme, calendula and peppermint from the garden.

Will add castor oil to the finished product.

These are culinary, bug repellent, antimicrobial, anti-inflammatory, aromatic.
2. Looking at blood pooling, cold spots, suspected compression, mechanical & molecular factors impact patterns.
1. Has anyone tracked their body temps in different parts of the body with infrared thermometers and correlated with dysautonomia symptoms over time? If so, have you found patterns on better/worse days? If no one has. We should start #thetemptest
@renegaderesearch.bsky.social medical coaching and consulting for MECFS and Long Covid patients is now open
Announcement!!

1. Clinics are shutting down, but patients w/ MECFS & Long Covid need to regain function. Resources are decreasing, while the need grows!

We are thrilled to announce the launch of a full-service coaching and consulting program tailored for patients with ME/LC
Helps us work to advance MECFS and Long Covid research and care.

My birthday is tomorrow and I am 5% to the goal. If everyone who can, donates just $5 & shares so others can do the same, I’m sure we can raise this by the end of the day.

www.zeffy.com/en-US/fundra...
Isabel Ramírez-Burnett
Remission Biome is a community science, patient and caregiver-led project of the non-profit, decentralized research organization, Renegade Research. We work in collaboration with researchers and clini...
www.zeffy.com
Not accepting specimens at all?
Reposted by Isabel Ramirez-Burnett
Check out the amazing presentation today from Todd Davenport and Ciara Wright on the details of The Acid Test.

youtu.be/6BUZtcC1Ezc
Almost done with the PEM cocktail study design. Next step is IRB application and recruitment.

This has had a major impact on decreasing PEM for me and a few early testers.

Will differentiate if severity level affects impact among other things.

Stay tuned!
Reposted by Isabel Ramirez-Burnett
Genome editing success for the first time in nine patients with alpha-1 antitrypsin deficiency, a heritable disease which can cause cirrhosis and emphysema, affecting ~100,000 Americans, which is similar to the prevalence of sickle cell disease
www.nytimes.com/2025/03/10/h...
Mutated DNA Restored to Normal in Gene Therapy Advance
The small study in patients with a rare disorder that causes liver and lung damage showed the potential for precisely targeted infusions.
www.nytimes.com
A little harvest from last summer.

This year I started early & have over 500 seedlings in my bedroom

Last year my kids fenced a big chunk of the garden (sorry groundhogs)

It is going to be a mini farm year
2. Will be growing several others in the ground, as it is a perennial in my zone (6b) and they have beautiful flowers, which also have medicinal properties, along with the seeds.

The tap root of chicory is often used as a coffee substitute, often with dandelion root.
1. I’m growing chicory this year as part of my medicinal garden.

This herb has many benefits, but metabolic and digestive health in particular, have been supported in clinical studies.

I’ll be growing several plants in containers to harvest the tap root.
Did a quick prompt in grok and this was interesting
Potentially. Will cross check and report back
My other happy place. As they say “gardening is therapy and you get to eat the tomatoes” 🍅