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

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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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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
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NORD Member Organization
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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

Monday, February 4, 2013

Urgent plea for UK sufferers to talk to media

Each person can be part of the solution. If only more sufferers would step up to be proactive, we would have answers more quickly; otherwise, we never will.
In an effort to raise awareness and to promote the Trinzyme Research Project in the UK, the MEBO Research directorship in the UK has worked closely with to try to set media exposure. Two have responded offering to give us coverage. We are looking for volunteers who have not previously done an interview. If interested, please contact Karen James at The following is information about one of the interviews in "Chat" posted by Karen James:

Community: Trimethylaminuria
Topic: Urgent plea for UK sufferer to talk to media

Post content: In view of the current progressions regarding TMAU research and awareness, I've been looking for UK media opportunities, and I've set up an interview with a woman's magazine in which I hope to: mention the forthcoming research grant from the Medical Research Council, encourage readers to donate to MEBO to raise further funds to continue that research, and promote the tmau film 'The Boy Who Smells Like Fish'.

The interview is for:

Dawn Murden
Feature Writer
Full House! Magazine


Tel: 0207 421 5433

Full House! Magazine
Swan House
37-39 High Holborn

'I'm looking to feature you in the health section, it will be a 500 word article written in the first person following an interview. It will also have a fact box about the condition at the end. You'll need to provide a head and shoulder shot of yourself, and will have the article read back to your over the phone.

We do ask that all our stories are exclusive, i.e. haven't featured in other women's magazine. Local and national press is fine. To ensure this, we'd ask that you sign a contract. It's nothing scary, really just says you are okay to speak with, provide picture, etc.

We can include a website at the bottom of the article as well.'

Both myself and the one other UK sufferer who came forwards to be interviewed have already been featured in women's magazines which means we will be rejected. This is a recurring problem for our community. Please let me know if you or a fellow sufferer might be interested, or contact Dawn directly.
Emma at Caters News - e-mail address: - is also willing to do an article with a new sufferer. It will be a shame to miss this opportunity as the timing of this publicity is so good.

Please help! If we all waited for someone else to do all the work, nothing would get done. Each person can be part of the solution. If only more sufferers would step up to be proactive, we would have answers more quickly;Otherwise, we never will.


María de la Torre
Founder and Executive Director

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