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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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
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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

Monday, June 10, 2024

Leveraging Existing Technologies While Awaiting Advanced Detection Methods

Living with MEBO can be challenging and frustrating. While we await the emergence of specialized personal odor testing devices that can accurately detect and measure trimethylamine, there is an opportunity for individuals in our community to contribute to research on long-term environmental exposures. These exposures could include compounds responsible for PATM and MEBO. 

Volatile organic compounds (VOCs) emanating from human skin and exhaled breath are of great interest to researchers in medical and forensic fields. These compounds provide valuable insights into our health, metabolism, and interactions with the environment. However, the study of VOCs is currently limited by the methods used for sample collection and pre-concentration.

One promising technology in this field is the use of wristbands designed to absorb VOCs. These wristbands have been successfully used in studies exploring the complex relationships between the human skin microbiome and the attractiveness of individuals to mosquitoes, as well as the effects of diet and personal care products. By collecting and analyzing the VOCs absorbed by these wristbands, researchers can gain a better understanding of the chemicals we are exposed to in our daily lives and those emanating from our bodies.

Trimethylamine (TMA) presents a significant challenge for detection due to its low abundance, volatility, and unique properties. TMA’s polarity affects its behavior in various contexts, from odor perception to solubility. While traditional wristbands can accumulate a wide range of VOCs, including those related to food exposure and antimicrobial soaps, not all materials have a high affinity for TMA, which hinders selectivity. More research is needed to improve wristbands and other samplers to better detect TMA and other challenging compounds.

Understanding chemical exposure in our daily lives is crucial for public health. A recent innovative study aims to achieve it by enlisting volunteers to wear specialized wristbands for seven days. These wristbands are designed to absorb a variety of chemicals, providing a comprehensive view of the substances individuals encounter in their environment and those emanating from their bodies.

By participating in this study, you can help researchers gather data that could eventually allow for the comparison of results from MEBO community. This research has the potential to benefit our community by providing new insights into long-term odor issues and environmental exposures. 

If you are interested in participating in this study and have questions, please contact us at studies@aurametrix.com or share your insights on Facebook. 

The study is conducted by our friends at Vanderbilt University, led by Dr. Wei Zheng, Anne Potter Wilson Professor of Medicine, and Dr. Martha Shrubsole. 

To join, click this link

Eligibility: Adults ages 40-70 living in Alabama, Arkansas, Delaware, District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, Missouri, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, West Virginia.


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A EURORDIS and NORD Member Organization

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