Isabel Ramirez-Burnett

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.

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 ..

YouTube video by Renegade Research Renegade Research Medical Coaching and Consulting Program

2. Watch the recording and fill out the interest form if interested.

Recording of the info session youtu.be/r_N9apL7k1E?si…

Fill out the interest form https://docs.google.com/forms/d/e/1FAIpQLSf1ky9ur01iGDfHG-0dOrPLiRTV0P9AuztpS_5AJ5g_RKMLvA/viewform?usp=header

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

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...

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...

My birthday is in 2 days. Help me celebrate by helping me do the work to advance research and care of MECFS and Long Covid at @renegaderesearch.bsky.social

Donate to my birthday fundraiser if you are able. Any amount helps

tinyurl.com/Renegage-Res...

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...

Help me celebrate my birthday next week by donating to @renegaderesearch.bsky.social and help us do this much needed work

www.zeffy.com/en-US/fundra...

Not accepting specimens at all?

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!

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.

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...

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

Parents are holding ‘measles parties’ in the U.S., alarming health experts - National | Globalnews.ca As measles cases continue to rise in Texas amid an ongoing outbreak, health officials are warning against so-called "measles parties," calling the practice dangerous.

Measles parties? have no words!

globalnews.ca/news/1106288...

My other happy place. As they say “gardening is therapy and you get to eat the tomatoes” 🍅

Scientists Uncover New Way Cancer Evades the Body’s Defenses Researchers identify mitochondrial transfer between cancer and immune cells as a crucial mechanism for immune evasion. The immune system is essential for identifying and eliminating cancer cells. Canc...

Mitochondrial transfer with mitophagy inhibiting factors for immune evasion in cancer (as clever as microbes)

scitechdaily.com/scientists-u...

San Antonio-area charter school now says they have a case of rubella, not measles Officials at Legacy Traditional School – Cibolo said Thursday they had confirmed a measles case in a first-grade classroom. They later said the case was actually rubella.

The R in MMR enters the chat

www.tpr.org/education/20...

I keep repeating this till I’m blue in the face. Being able to function allows people to integrate everything else.

Pharma’s profit motive & providers stopping at Sx control are both an issue, yet medications helping to increase function are all true at the same time.

YouTube video by Aspen Medical Products Understanding the Vista Line

2. www.youtube.com/watch?v=o-7h...

youtu.be/8hEn-y4YElI?...

1. You want to make sure the chin rests on it without tilting your neck back. If the lowest setting tilts it, then you need pediatric size.

I’m posting 2 good videos for fitting it. If you are eligible for invasive traction, you may need the torso piece as well.