Lightnews — Scholar-powered news

Isabel Ramirez-Burnett @isabelrb.bsky.social · 18d

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)

Isabel Ramirez-Burnett @isabelrb.bsky.social · 18d

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

Isabel Ramirez-Burnett @isabelrb.bsky.social · 18d

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.

2 1

Reposted by Isabel Ramirez-Burnett

María Richardson @diatoma.bsky.social · Aug 21

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 ..

Nele @nelehelena.bsky.social · Aug 19

You can also sign and share this petition if you want to help:

petities.nl/petitions/ge...

Geef ME-patiënten gepersonaliseerde zorg

Academische ziekenhuizen weigeren noodzakelijke zorg of mee te werken aan een passend behandel plan voor ME patiënten en dat leidt tot verschrikkelijk leed soms zelfs de dood. Help mee aan de erkennin...

petities.nl

1 12 16

Isabel Ramirez-Burnett @isabelrb.bsky.social · Aug 22

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

Renegade Research Medical Coaching and Consulting Program

YouTube video by Renegade Research

https://youtu.be/r_N9apL7k1E?si…

Isabel Ramirez-Burnett @isabelrb.bsky.social · Aug 22

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

1 5 5

Isabel Ramirez-Burnett @isabelrb.bsky.social · Aug 13

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.

3

Isabel Ramirez-Burnett @isabelrb.bsky.social · Aug 12

2. Looking at blood pooling, cold spots, suspected compression, mechanical & molecular factors impact patterns.

6

Isabel Ramirez-Burnett @isabelrb.bsky.social · Aug 12

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

3 1 9

Isabel Ramirez-Burnett @isabelrb.bsky.social · Jul 22

@renegaderesearch.bsky.social medical coaching and consulting for MECFS and Long Covid patients is now open

Renegade Research @renegaderesearch.bsky.social · Jul 22

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

2 4

Isabel Ramirez-Burnett @isabelrb.bsky.social · Jul 1

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

1 6 7

Isabel Ramirez-Burnett @isabelrb.bsky.social · Jun 30

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...

tinyurl.com

10 14

Isabel Ramirez-Burnett @isabelrb.bsky.social · Jun 27

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...

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

3 3

Isabel Ramirez-Burnett @isabelrb.bsky.social · Jun 10

Not accepting specimens at all?

Reposted by Isabel Ramirez-Burnett

Renegade Research @renegaderesearch.bsky.social · Mar 28

Check out the amazing presentation today from Todd Davenport and Ciara Wright on the details of The Acid Test.

youtu.be/6BUZtcC1Ezc

9 24

Isabel Ramirez-Burnett @isabelrb.bsky.social · Mar 27

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!

4 6 28

Reposted by Isabel Ramirez-Burnett

Eric Topol @erictopol.bsky.social · Mar 11

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

9 61 260

Isabel Ramirez-Burnett @isabelrb.bsky.social · Mar 7

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

6

Isabel Ramirez-Burnett @isabelrb.bsky.social · Mar 7

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.

2

Isabel Ramirez-Burnett @isabelrb.bsky.social · Mar 7

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.