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

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MEBO Karen
at UK Findacure conf 2020

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

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


Participation info : LINK English

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BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect TMAU

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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

Wednesday, November 28, 2012

UK TMAU Petition to House of Parliament

British ? Sign the UK TMAU petition
UK Petition for the attention of the UK Government Department of Works and Pensions

A young British lady has taken the initiative to start a petition regarding Trimethylaminuria (TMAU) on the official government site for UK petitions to the legislators in the UK. Presumably only British nationals are wanted to sign the petition.

The petition is to make legislators aware of the effect of having TMAU on those who are TMAU sufferers. If 100,000 signatures could be obtained, the legislators would be likely to discuss the topic in Parliament. All details of signees are kept private.

British Nationals Sign the TMAU Petition here


Anonymous said...

I have just signed the petition.

This is similar to a US one:

It would be good to get a Doctor to back the UK petition.

Nov 28, 2012, 4:49:00 PM
Anonymous said...

where do we sign that US petition ??

Nov 29, 2012, 5:12:00 PM
Maria de la Torre said...

The US Petition was initiated on June 12, 2011, and we obtained 454 valid signatures by March 2012. Unfortunately, this Petition became invaded by spammers to such an extend, that I was manually deleting over 100 spam signatures a day. As a result, it was closed.

I ran across another site called, WE the PEOPLE Whitehouse, where I see that people create petitions. I think it may or may not be an interesting site for us to start a new petition, but I simply have not had time to look into it. Any volunteer that would like to find out all the details about this opportunity, and to help our community initiate a Petition in this site, if indeed it is safe from spammers, please let me know. I'll welcome your volunteer work that we could coordinate together.

Thanks for your interest.

Nov 29, 2012, 6:12:00 PM
Maria de la Torre said...

The initial MEBO Petition, was translated into Spanish and Portuguese in the MEBO website, and people from many countries in the world signed it. It's a pity spammers destroyed it. We can start a duplicate of it, so that in the end, we can still take advantage of the initial 454 signatures. Just a thought, if anyone would like to help with this cause.

Nov 29, 2012, 6:45:00 PM
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