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MEBO TMAU TESTING DISCONTINUED
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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

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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
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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
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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, April 16, 2012

Discrimination against TMAU sufferer published in MSN Now!



msnNOW, WHAT’S TRENDING
Monday, April 16, 2012
An article about, "A British woman is begrudgingly eating only fruits and vegetables because not doing so would leave her smelling like rotten fish..."

ATTENTION PLEASE!

PLEASE READ THIS ARTICLE POSTED IN MSN NEWS. Yes, it's yet another raising awareness article, but what has made my blood boil are the mocking comments made by readers! I encourage every single BO & BB sufferer to write a comment telling these people everything you have ever wanted to say to those who discriminate against us!

I already wrote a comment, as did LacyBell. Come one, everyone. Show them we won't take it sitting down! Teach them that they are the ignorant politically incorrect fools.

María

María de la Torre
Founder and Executive Director

A Public Charity
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maria.delatorre@meboresearch.org
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A EURORDIS and NORD Member Organization

posted by Maria de la Torre on 4/16/2012
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