RemissionBiome MECFS/LongCovid Self-Experiment
@remissionbiome
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Community science, patient-led project of the non-profit, decentralized research org, @renegaderes . Serendipity meets preparation.
Joined December 2022
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Pinned Tweet
Research Roundtable recording!
Single-cell immune profiling results from before, during, and after
@tessfalor
took Amoxiclav.
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18
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🤩 Hello,
#RemissionBiome
.
📣We are thrilled to announce that we just got a $250k grant from
@VitalikButerin
's Kanro Foundation AND a private donation of $45k!
@tessfalor
@chydorina
@IsabelRamirezRD
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BIG NEWS! Balvi (
@vitalikButerin
) is giving us a grant for our
@RemissionBiome
pilot study! Along with our GoFundMe, private donations, & sponsors we have full funding. This is huge. We will be able to sample before, during, & after remission with all of the tests that we wanted.
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We have too many new followers recently and it's making us soo happy.
Welcome to
#RemissionBiome
everyone 👋
#RemissionBiome
is a
#PatientLed
#MECFS
&
#LongCovid
#SelfExperiment
protocol founded by PhD Scientists/Patients
@chydorina
&
@tessfalor
.
We are a big/caring family…
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We were keeping a secret - we had another person,
@IsabelRamirezRD
, doing the experiment with us (but on a shoe string protocol). It turns out she is fully in a Level 1 remission as of Day 5. We are obviously all so excited that keeping her a secret any longer just isn't an…
15
9
210
1 day until we attempt to kick our systems into a new, higher baseline, state!
@chydorina
@ales_frost
Tomorrow we start:
Amoxiclav
Doxycycline
DeltaG exogenous ketone esters
D-lactate free custom Probiotics
L. reuteri
Akkermansia
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.
@remissionbiome
is in
@ScienceNews
!
"Patient-led research “moves orders of magnitude faster than traditional modes of research,”
@PutrinoLab
says, because it focuses on the questions that are of greatest concern to patients, leading more quickly to…
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The next phase of
@RemissionBiome
will include 50 people completing the protocol as a self-experiment, supervised by their healthcare providers.
Apply to become one of those 50!
All questions visible at once:
Split by sections:
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We're excited to announce that Peter Rowe, MD will be presenting to the
@remissionbiome
@renegaderes
community on Feb 9 & 16!
What’s new in ME/CFS, OI/POTS, CCI, MCAS, and more
Sign up now!
#MECFS
#LongCOVID
#CCI
#AAI
#MEspine
#MCAS
#hEDS
#POTS
#TOS
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Tamara
@chydorina
+ Tess
@ales_frost
are scientists + patients who improved from severe
#MECFS
after taking antibiotics
Our aim w/
@remissionbiome
is to look at how modifying the microbiome can shift the baseline in
#MECFS
Please consider donating:
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Tamara
@chydorina
& Tess
@ales_frost
are scientist-patients who improved from severe
#MECFS
after taking antibiotics
Our aim w/ is to see if modifying the microbiome or other effects of antibiotics can shift the baseline in ME/CFS
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Prof. Dr. Karl Morten : Mitochondrial Dysfunction-Relevance for CFS and Long Covid
H/T
@Michaeltikus
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🧵 1/13
📣Shout out to
#MECFS
&
#LongCOVID
community.
🔹Today, we're launching the first thread of our "Themed Tweet Series".
🔹 These series are going to be comprised of the videos Tamara (
@chydorina
) recorded for you.
🔹They're the subtitled versions of the videos shared…
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Some news from RemissionBiome:
The project is at an inflection point. Some members of the community had a desire to go a different direction and we wish them well wherever new ventures take them. We will share more details when we can.
We at RemissionBiome remain committed to…
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8
136
50 people (the
#Renegade50
) will start the
#RemissionBiome
self-experiment, supervised by healthcare providers, soon.
More than half of the 50 need financial support for the base protocol, which costs $3k including safety testing.
If we add on additional interventions that we…
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🚨 Another remission is happening right now!
From Madeline: "I just hit LEVEL ONE!!! I can’t believe it really happened. I feel great. Calm, happy. I went up the stairs like a normal person, not like an exhausted one. I don’t know how long this will last, but I’m…
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How can the antibiotic AmoxiClav completely turn off sickness symptoms, like a switch flipping?
@KatBoniface
explains why Clav (Clavulanic acid) might be 📷
(This is directly related to the new paper that came out about glutamate &
#LongCOVID
! )
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Watch the recording of Dr. Peter Rowe's talk that he just did for the community:
It was fantastic! We can't wait to have him back next week and for a clinical roundtable in the future.
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SUBTITLED 📽️
"Energetic Dysfunction in
#MECFS
&
#LongCovid
"
🧵1/9
👉Mitochondrial Fatigue
@chydorina
@tessfalor
@IsabelRamirezRD
@RemissBiomeVids
@remissionbiome
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Exciting news! We got
@tessfalor
’s single-cell immune profiling data back from
@imyoohealth
. There's a clear signature of gene expression changes in CD14 monocytes during the AmoxiClav & for months afterwards!
Here's one example, but there are many more genes affected.
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Hi👋This account is run by
Tamara
@chydorina
+ Tess
@ales_frost
We’re scientists + patients (yes, you can be both!), who improved from severe
#MECFS
after taking antibiotics
Our aim w/
@remissionbiome
is to look at how modifying the microbiome can shift the baseline in
#MECFS
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Hello folks. We're currently trying to organize
@chydorina
's videos on everything you'd like to learn about the
#RemissionBiome
protocol. Preperation, phases, safety, recommendations and so on... All will be in one Twitter thread & will be aired very soon. Please stay tuned.…
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14
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Let's take a moment to appreciate the incredible community we've built. Your presence matters, and your story contributes to the tapestry of strength that defines us. Together, we are unstoppable!
Our community is a wellspring of inspiration. Witnessing the resilience of others…
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10
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Hi👋🏼This account is run by Tamara
@chydrorina
+ Tess
@ales_frost
. We’re scientists+patients (yes, you can be both!), who improved from severe
#MECFS
after taking antibiotics
Our aim w/
#remissionbiome
is to look at how modifying the microbiome can shift a person w/ME’s baseline
7
18
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🚨🚨RemissionBiome Level 2 reached!!🚨🚨
@IsabelRamirezRD
is now experiencing the "Level 2" type remission that
@ales_frost
experienced in 2009 and
@chydorina
in 2019!
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9
97
@remissionbiome
is a citizen science
#MECFS
self-experiment being done by
@ales_frost
@chydorina
@IsabelRamirezRD
, which has grown exponentially due to community support. Thanks to all of you for your support!
Hiya, if you’re following and supporting
@remissionbiome
could you tell me why?
What makes patient-led research so fascinating? Why is it particularly important for our community?
Pls feel free to answer any of the Qs above & thank you 🙏
#MECFS
#LongCovid
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🧵 1/13
🙋♀️Hello,
#RemissionBiome
Family.
📣Shout out to
#MECFS
&
#LongCOVID
folks.
🔷Here's the 2nd Tweet-Series named "Vagal Interventions & HRV".
🔷The aim of this thread is to show you the techniques you can use to downregulate the sympathetic nervous system and…
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Big announcement 📢
The 3rd
@remissionbiome
#Renegade50
participant started taking amoxiclav. 🤞🫶 🎉
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📍Hi,
#RemissionBiome
. You know, most people with
#LongCOVID
&
#MECFS
suffer from high levels of anxiety as a consequence of
#MCAS
(Mast Cell Activation Syndrome). Not to mention the sleeping problems. In such circumstances, benzodiazepine derivatives such as clonazepam and…
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12
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@remissionbiome
update:
@IsabelRamirezRD
woke at Level 1 and THEN hit Level 2 AGAIN this morning!!! Not as extreme as last time + shorter but all the right qualia was occurring (she reckons it started to go down after 2 hours). She is now holding steady at Level 1. This was a…
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#LongCOVID
&
#MECFS
folks out there. Do you suffer from headache, migraine, brain fog, googly-eyes, attention deficit, eyelid ptosis and so on? Our brains, neurons and glial cells are inflamed. So it's really accurate to say that the brain is on fire. That's why finding ways to…
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14
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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.
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Hi all. In this video, Tamara (
@chydorina
) explains why Tess (
@ales_frost
) and her chose to add a daily Yoga Nidra practice in their
#RemissionBiome
Journey. Yoga Nidra is a unique way to tap into your unconscious. It decreases anxiety by directly impacting the parasympathetic…
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Calling all
#MedTwitter
#MedX
clinicians interested in
#MECFS
#longcovid
#PICI
to our first clinician's roundtable, Friday 3/15 at 1 pm EDT.
@RuhoyMD
& D. Kaufman, MD will present, followed by clinician's Q&A and discussion. - Can't attend live? register…
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Apply to be part of the community-science self-experiment project,
@remissionbiome
!
Let's show potential donors how much support and interested there is in the
#MECFS
#LongCOVID
community.
We'll review applications on a rolling basis.
The next phase of
@RemissionBiome
will include 50 people completing the protocol as a self-experiment, supervised by their healthcare providers.
Apply to become one of those 50!
All questions visible at once:
Split by sections:
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154
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Level 1 remission for
@IsabelRamirezRD
!
We're going to keep experimenting to see if we can prolong time in Level 1 or kick it up to Level 2. We're also anticipating long term baseline improvements, based on
@chydorina
&
@ales_frost
+ other stories of remission we've collected.…
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71
This is going to be a fantastic study & is exactly the type of project that
#RenegadeResearch
@RenegadeRes
was created for!
Donations that come into our GoFundMe over the next 24 hours will be allocated towards this community lactate study.
Calling all citizen scientists who are currently measuring lactate! Join this thread if you are. They are planning for group data collection with standardized times from the lactate paper that came out recently
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SUBTITLED 🎥
🧵1/9
💠TREATING AND MANAGING MCAS AS PART OF REMISSION BIOME PROTOCOL
👉Why is it so important to treat MCAS?
@chydorina
@tessfalor
@IsabelRamirezRD
@RemissBiomeVids
#MECFS
#LongCovid
#MCAS
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67
The data we collect during the 1st self-experiment will help us narrow down hypotheses for follow-up studies, which we're already planning. Additional GoFundMe donations will go toward those future
@remissionbiome
studies.
Thank you to everyone who helped us get here! 🙏
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Description of what Level 2 remission feels like.
@IsabelRamirezRD
just experienced it today.
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62
From
@remissionbiome
#Renegade50
participant
@_diatoma
. Thank you, María💙
Please contribute to the
@remissionbiome
#RemissionFUND
for the
#renegade50
"Hi. My name is María and I'm gonna participate in a treatment protocol for Myalgic Encephalomyelitis…
6
16
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Hello
#RemissionBiome
@giorgialupi
of
@pentagram
is a data artist/designer who is helping
@remissionbiome
with a new brand strategy. She's working on a data-visualization project based on her experience with
#LongCovid
which will be published in a major news outlet soon.
She…
1
27
62
Hello
#RemissionBiome
Our beloved
@RuhiSleep
is going to do a sleep workshop for the community! 💙
This Saturday, Nov 18, 2pm ET
Register here:
#MECFS
#LongCovid
#Sleep
#SleepWorkshop
@chydorina
@tessfalor
@IsabelRamirezRD
@arta_semita
…
7
23
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.
@Pendulum_Co
is donating 50 bottles of Akkermansia and Glucose Control probiotics for future phases of
#RemissionBiome
! 🤯
4
3
55
From Ruth, one of the
@remissionbiome
#Renegade50
participants. Thank you, Ruth💙
Please contribute to the
@remissionbiome
#RemissionFUND
for the
#renegade50
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We're in
@ScienceNews
!
"Projects like Remission Biome “are going to change how research into these chronic, multi-organ-system diseases is going to be done,” Hoffman says. The approach may someday become a standard part of more mainstream research." -
@RedMDND
Compared with mainstream medical research that tends to focus on finding biological causes and disease cures, patient-led work is more often rooted in what’s immediately relevant to patients’ daily lives, like identifying symptom triggers or relievers.
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1
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Hello
#RemissionBiome
👋
We shared before that we have 2
#Renegade50
participants going through the acute phase.
The long term goal is baseline increases for all the participants. In the acute phase, we look for cycling and remission events to indicate the activity going on.…
Day 10 of
#RemissionBiome
acute phase and, practically in an instant, all
#longcovid
#mecfs
sickness symptoms are gone. I feel great - clear head, no pain, energetic. No clue how long it will last, but I’m being present and grateful for each “healthy” moment.
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SUBTITLED 🎥
🧵1/4
💠"Well-Functioning and Balanced Nervous System"
👉Beta-blockers for managing sympathetic over-activation
@chydorina
@tessfalor
@IsabelRamirezRD
@RemissBiomeVids
@remissionbiome
#MECFS
#LongCovid
#RemissionBiome
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@VitalikButerin
We are so grateful and so excited about the Balvi
@VitalikButerin
funding.
This is not just a 'self-experiment' anymore. We can begin work on our Phase 2 goal of bringing
@remissionbiome
to others including microbiome testing from
@biomesight
.
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3
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Hi👋This account is run by Tamara
@chydorina
+Tess
@ales_frost
. We’re scientists +patients (yes, you can be both!), who improved from severe
#MECFS
after taking antibiotics
Our aim w/
#remissionbiome
is to look at how modifying the microbiome can shift a person w/ME’s baseline
3
8
50
Video of how
@IsabelRamirezRD
is feeling. 🎉
This is what Level 1 remission feels like.
We were keeping a secret - we had another person,
@IsabelRamirezRD
, doing the experiment with us (but on a shoe string protocol). It turns out she is fully in a Level 1 remission as of Day 5. We are obviously all so excited that keeping her a secret any longer just isn't an…
15
9
210
2
7
48
18 days to when we press the RESET button on the gut microbiome at
@remissionbiome
!
We are well into our gut-brain preparation protocol and the excitement is rising!
Please check out our protocol on and donate to our
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🧵1/n
Hi, all. Are things that wouldn't have caused an adverse reaction in the past all of a sudden do? If so, you may have
#MCAS
. Wanna know how to manage it? Well, let's start from the scratch, then. Here we go!
Hello
#MECFS
&
#LongCOVID
folks. A thread comprised of
@chydorina
's videos (subtitled) & her important previous tweets on
#MCAS
will be aired in an hour. Stay tuned. Love, RB Team.
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Thank you to the anonymous donor who nearly doubled our GoFundMe total with a $5000 donation!!
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43
Wanna know more about
#Renegade50
's?
Our own
@hortonrachel_
interviewed with
#Renegade50
participant
@ellbail
for you.
We're so happy to have you in the team Elly. Thank you 💙
@chydorina
@tessfalor
@IsabelRamirezRD
@remissionbiome
@RemissBiomeVids
#RemissionBiome
#MECFS
…
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10
42
We got another $20k in donations in the past 2 days! HUGE thanks to
@BrendanBlumer
!
We're <$15k away from our goal. Phase 2 is becoming a reality thanks to 111 amazing donors. Please help push us over the line. 🙌
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"We were able to detect robust dysregulation in certain immune cells from [
#MECFS
] patients, with dysregulation of classical monocytes manifesting the strongest signal."
(Figure 2 from the paper - Dysregulation of immune cells in ME/CFS)
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8
41
Another level 2 remission! (She confirmed brighter colors in a follow up Tweet.) Unfortunately no baseline increase. Hopefully data from our studies will help us tease out how baseline is affected, so that everyone can get the baseline bump.
@chydorina
@Chronically2784
@ales_frost
@Paula_JKnight
@remissionbiome
My daughter had a “remission event” after ceftriaxone (but relapsed to baseline over the next few weeks), so we’re both following you with huge interest. Thank you for all you’re both doing and keeping my fingers crossed for your recovery
1
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41
People w/
#longCOVID
&
#MECFS
, how is your deep sleep? Did you know that you can trigger a state that is perceived by the body as deep sleep during the day, while awake?
Today we're talking about Non Sleep Deep Rest (NSDR), another name for Yoga Nidra.
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We're getting close! We have a few more products and test kits coming in and then will get started with 2 weeks of baseline testing before taking the antibiotics.
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1
41
Do you want to understand the science behind
#RemissionBiome
? This 44 minute
@microbeminded2
@MBVanElzakker
talk is a great overview of a lot of it.
“We're going to talk a little bit about the anatomy of feeling sick ..."
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From
@remissionbiome
#Renegade50
participant Greg. Thank you, Greg💙
Please contribute to the
@remissionbiome
#RemissionFUND
for the
#renegade50
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Here's the full video
@ErinSandersNP
would like to be captioned. From RB team, with love 💙
@DafoeWhitney
@jenbrea
@YouTube
@owasow
@thephysicsgirl
@_nightbirde
Wish I could post the whole thing.
She ends saying “you are loved and I am loved. I feel like I had to say that to somebody, maybe just myself.”
This was her last video.
If anyone has the spoons to add captions I would be so grateful.
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One of our sponsors,
@FitBiomics
, is running a study on fatigue. It's open to people w/
@LongCOVID
&
#MECFS
. They have a new product that includes Veillonella, which shot up during
@chydorina
's 2019 remission event.
Sign up for the study here:
2
7
39
We're adding oral microbiome testing to
#RemissionBiome
! Thanks to
@bristlehealth
for sponsoring our project.
Why this could be a piece of the puzzle: Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function
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3
39
SUBTITLED VERSION 📽️
#MECFS
#LongCOVID
#RemissionBiome
#PatientLed
#SelfExperiment
#RecoveryPhase
#Subtitled
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SUBTITLED VERSION 📽️
#MECFS
#LongCOVID
#RemissionBiome
#PatientLed
#SelfExperiment
#PreperationPhase
#Subtitled
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8
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SUBTITLED 🎥
🧵1/13
💠"Self-Care"
👉Cervical collar for coathanger pain and migraine for
#MECFS
&
#LongCovid
patients who have hypermobility or cervical instability
@chydorina
@tessfalor
@IsabelRamirezRD
@RemissBiomeVids
#RemissionBiome
4
12
38
Update: We (
@chydorina
&
@ales_frost
) are working hard to finalize our
@remissionbiome
protocol so that we can order everything and get started with our experiment as soon as the kits arrive. We currently have 23 different tests planned!
1
3
38
@RenegadeRes
clinician's roundtable is now posted to our YouTube channel. Thank you to Dr.
@RuhoyMD
and Dr. Kaufman for sharing their expertise. Thank you to everyone who attended & working to get us moving forward.
1
19
37
Thank you all for helping us bring
@remissionbiome
together so quickly! This project has turned into something much more than we ever could have imagined. It started w/
@chydorina
&
@ales_frost
just deciding to take antibiotics at the same time & test w/
@biomesight
last fall!
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37
The
#RemissionBiome
team is going to open a Twitter space through this account at 9:30am PT this morning. Please join to hear an update of how we're feeling, ask questions, and share ideas.
@chydorina
@ales_frost
@IsabelRamirezRD
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We've been using Veillonella from
@FitBiomics
as part of our protocol. They're one of our sponsors & are now starting a study on fatigue & want
#pwME
#longCOVID
#MECFS
to participate! If you are selected, you'll get 1 month of free …
0
10
37
For those who are interested, here's a plot summary of the entire protocol for
#RemissionBiome
which is composed of 3 phases.
📌In the preparation phase (30 days), we use probiotics, anti-neuroinflammatories and vagal stimulation to get our systems into …
2
8
37
New blog post:
@RemissionBiome
prep week 1 and schedule
"Gut prep is starting today, February 12th. In order to prepare our guts for the antibiotics, we’re taking ... We’re also starting baseline testing this week."
3
9
36
Here are the tests we're currently considering. Does anybody have recommendations for additional ones that could help us narrow down hypotheses?
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We just got a $2000 donation toward our
#RemissionBiome
testing! 🤯
This is going to allow us to include organic acid &/or intestinal permeability testing.
We're amazed by the generosity of the
#MECFS
community. We're now up to $2983 on our GoFundMe.
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SUBTITLED 🎥
🧵1/3
💠"Vagus Nerve Stimulation"
👉Ultrasonic Stimulation
@chydorina
@tessfalor
@IsabelRamirezRD
@RemissBiomeVids
#MECFS
#LongCovid
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8
35
All of
@chydorina
's vagal intervention and HRV videos are up on our blog with transcripts!! A wealth of knowledge.
HUGE thanks to
@mervetepePhD
. This was a lot of work transcribing them.
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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:
3
13
34
Two days until
@ales_frost
and
@chydorina
start Amoxiclav and Doxycycline!
See the full protocol:
Hear (or read) our story & an overview of the project:
2
12
34
#RemissionBiome
journal club Zoom meeting this Friday, March 10, at noon EST! We're going to discuss this paper, which is very relevant to the single-cell immune profiling & cytokine testing we're doing.
DM
@ales_frost
if you want to join
5
10
34
7. Read more about our story in this article written by
@NataliaHodgins
:
"...it was like a switch had been flipped. I went from being bedbound in a darkened room, to running around outside making angel shapes in the grass"
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From
@remissionbiome
Renegade50 participant Elly Brosius (
@NovaSupport
). Elly is a Facilitator of the Northern VA ME/CFS, LC, FMS & OI Support Group
@CFSnova
, and a Tweeter for ME Action NC,
@MEActionNC
. Thank you, Elly 💙
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📍Hello
#LongCOVID
&
#MECFS
family. Today,
@chydorina
introduces anti-neuroinflammatory Apigenin which is a bioflavonoid compound found in plants like chamomile and celery.
📍We use Apigenin in the preparation phase of the
#RemissionBiome
self experiment …
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Clip of
@chydorina
collecting her
@imyoohealth
sample today using a
@yourbio_health
Tap II at home capillary blood collection device. Tech like this can allow bedbound & housebound
#MECFS
patients to participate in research. 👏
To watch the full process:
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Live now!
Our webinar "Changes in the Gut Microbiome in ME/CFS and Long Covid" starts at 1 pm PT / 4 pm ET today. Ramsay Grant winner David Esteban, PhD, will present his latest research and take questions from patients.
Sign up:
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.
@imyoohealth
is working on a detailed blog going deeper into the findings and the data
@remissionbiome
is a community-science project. Everyone can contribute. Who wants to help? Please comment or DM with ideas, references, contacts, etc.
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This is so exciting (not as a brag!), but because it concretely shows huge increased interest in
#LongCovid
, including by medical/research professionals.
670k downloads in 2 months & being
#184
of 23,298,349 papers is unreal.
This gives me hope, I hope it gives you some too!
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Hi
#RemissionBiome
. In this video, Tamara (
@chydorina
) introduces the anti-neuroinflammatories (apigenin, palmitoylethanolamide & beta-caryophyllene) we use in the preparation phase of the
#RemissionBiome
protocol. These are the key supplements we use to …
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@hortonrachel_
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 team and looking forward to seeing you playing bassoon again. 🙏💙
@chydorina
@tessfalor
@IsabelRamirezRD
…
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From Olivia, one of the
@remissionbiome
#Renegade50
participants. Thank you, Olivia 💙
Please contribute to the
@remissionbiome
#RemissionFUND
for the
#renegade50
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