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anti-TMA pill in a year or 2 ? (scroll 12 mins)

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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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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

Thursday, September 18, 2008

Member of TMAU Foundation in Thames Festival 2008 Meet-up

One of the beautiful young ladies who attended our Thames Festival 2008 Meet-up dictated an audio presentation for us, which is herein transcribed. She would also like to extend the following invitation to us:
I would like to invite all of you to contact me if you require membership of the Renewal newsletters which are produced in the US and distributed locally in the UK with contribution from people with TMAU and other odour conditions. In addition, if you would like me to address any questions to Dr. Lachmann when I get around to interviewing him, please let me know so that I may advise him of these issues beforehand so that he would know what our concerns are. You may read about this interview in our Renewal newsletter afterwards.
tmauvb@yahoo.co.uk
Transcription of her audio message:

Hello, I’m here to talk about the UK Meet-up on Sunday, 14 September 2008. I live and work in London and study for a psychology degree with The Open University, and I have been diagnosed with Secondary TMAU, and in my spare time, I am involved in a support group network for people living with Trimethylaminuria.

I am also a member of the TMAU Foundation, which is coordinated in the US/New York, and we produce a newsletter called ‘Renewal’ globally. Since being a member, I have come across various other support groups for body odour conditions, one being the MSN Body Odor. One of the main coordinators, Arun Nagrath, from that site organized a Meet-up this weekend in London during the Thames Festival, which you could probably hear in the background.

I did not attend on Saturday, but Sunday, there were about 8 of us. We spoke openly about our experiences and had some good fun and good food. I met lovely people who I intend to keep in contact with, so hopefully good friendships can develop. I am honored to be part of this group and grateful to Arun for organizing.

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