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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

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Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Sunday, April 11, 2021

MEBO Research study, reaction to COVID vaccines

Our MEBO Scientific Director, Irene Gabashvili, PhD., has registered a new study for the MEBO community with
ClinicalTrials.gov.  

Official Title of the Study is "A Phenotypic Study of Safety, Tolerability, Reactogenicity, Immunogenicity, and Virus Shedding Potential of Emergency-Use-Authorized Vaccines Against COVID-19".  The study will focus on understanding the effects of COVID and the vaccines on people with odor conditions compared to people who don't have odor conditions. Questions like, how a COVID vaccine affect odor levels are addressed. This might provide a key to point out possible differences in metabolism and/or gut microbiota between sufferers and non-sufferers' reactions to COVID & vaccines. 


Brief Summary:

During the study, members of different neighborhood and digital communities will be followed post COVID-19 vaccination. 

Injection-site (local) and systemic reaction data will be assessed on vaccination day and afterwards using either web surveys or personal communication, depending on study participant preference. 

Hypothesis to be tested is the safety profile and the magnitude and durability of immune responses to the COVID-19 vaccines as well as the adverse reactions depend on health conditions, metabolism and microbiomes.

The study will focus on understanding the effects of COVID and the vaccines on people with odor conditions compared to people who don't have odor conditions.
We are currently waiting for the study approval by the MEBO Independent Review Board (IRB) before commencing. As soon as it is approved, MEBO will inform on the procedures to take for anyone interested in being a study participant.

For more information, see the following post Irene made in Aurametrix:




Vaccine to cure body odor? 


There could be a vaccine for everything. Scientists are working on personal vaccines, vaccines reducing body weight or narcotic dependence, vaccines for just about anything. Can there be a vaccine improving body odor? Certainly, and it could target not only bacteria (in body crevices) worsening odor, but also molecules responsible for odor.

This would be a very complex task, however, as there is still a lot we don't understand. For example, if metabolism and microbiomes leading to body odor cause similar reactions to already existing vaccines...

What is missing? The ability to systematically analyze these reactions in different health and neighborhood communities. We started such a study in one neighborhood community and would like to also conduct it in the MEBO/PATM communities. We are also opening it to MEBO friends and family - asking them to indicate their relationship with MEBO/PATM in the comment section of the survey.

Anyone interested in participating in this study once we receive approval from the MEBO IRB, mau email me at maria@meboresearch.org, and ask for your MEBO ID# so that the privacy of your identity will be protected throughout the study.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization

1 comments:

Anonymous said...

This will be useful. I recently got a first dose vaccination and experienced drastic changes in odor conditions, among other side effects. (There was choline in the vaccination formula. )

Also, just having had Covid-19, I could write an essay on the number of changes I experienced in metabolism and ability to process different foods (eggs, chocolate, etc.)

Covid-19 changes your heart rate and body temperature continually--you never know if you'll be hot or cold, calm or hyper. So, sign me up!

Apr 14, 2021, 7:52:00 PM
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