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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
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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

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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

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BO Sufferers Podcasts

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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
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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

Saturday, July 5, 2014

Young UK musician Cassie raises awareness of TMAU in the media

A young lady from London has appeared in the UK media this week to raise awareness of trimethylaminuria (TMAU) by talking about her own TMAU. Cassie is 22 and is a budding Jazz musician and singer. She is also a psychology student. Her official facebook page mentions her singing style and voice being compared to Amy Winehouse.

Her article for the article about her TMAU has appeared on a number of news sites worldwide, including one of the biggest online news sites, the Daily Mail online. Cassie talks TMAU in the Daily Mail

Cassie mentions that she heard of TMAU on a radio interview, which may have been one of Ellie's interviews earlier this year.

Thank you to Cassie for being a brave pioneer in raising awareness of TMAU.  The first step to understanding, treatment and research of metabolic malodors is first for the public to become aware of the condition. Currently nothing is done as mewtabolic malodors are not known of apart from TMAU, of which only a handful of health experts have ever had an interest and usually have no funding or other things to do.

Other links related to Cassie :
Cassie Graves official Facebook page
Cassie Graves Twitter page
Cassie Graves Youtube channel
Cassie Graves official website


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