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

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
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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Blog Archive

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

Friday, December 10, 2010

Video Testimonial of C

We have posted many videos in this blog, most involving sufferers who tell their story on television networks in the United States and United Kingdom. We have had numerous videos of Arun inviting us or telling us about the various meetups in the UK, and I’ve enjoyed myself creating videos of meetups in the UK and Nashville, TN, US that I’ve attended, as well as beautiful places I’ve visited. But I must say, some of my favorites are the “home made” videos done by sufferers in their own homes with their cam cameras sitting at their computers. Those are relatively unrehearsed or coached, and they come straight from the heart.

Here is a video of a beautiful young lady, Crystal Y from the Serendip Body Odor group, who just wants to ‘come out’ to us, and to tell us her story. Crystal told me that she would love for others to see her video and is honored to have the opportunity to inspire someone else. These are her words:

Hi María,

I appreciate the amazing feedback on my video! I absolutely do not mind if you post it,...In fact, I want others to see it. I'm honored to have the opportunity to inspire someone else; if I could inspire just one person in the smallest way, that would mean a great deal.

Thank you again and I look forward to connecting with your community as well.


Crystal Y

I know everyone will enjoy the experience of meeting Crystal in this video. She says that would love to hear from us too, and she gives us her email address, in case anyone would like to write to her.

We have a page in MEBO’s blog called “COMMUNITY INVOLVEMENT,” and I invite everyone to browse through the "COMMUNITY FORUMS AND BLOGS" and to visit some of the various community forums and blogs it lists from around the world of the English speaking communities as well as the "DIVERSE LANGUAGES BODY ODOR FORUMS AND BLOGS". This page also has a section on "BOOKS WRITTEN BY SUFFERERS", including an anthology written by the former MSN Body Odor Support Forum that was closed and we migrated to the new Body Odor Support Forum bought for us by Arun Nagrath. This page also lists "INTERVIEWS WITH EXPERTS" that have so kindly given of their time to explain to us about body odor conditions and their recommendations.

The last but not least section of this page in our MEBO Blog invites sufferers to "MAKE YOUR OWN BODY ODOR/HALITOSIS VIDEO" as Crystal has done. We also have another sufferer who did a 3 Part video that we posted, “Filipino gentleman talks about his TMAU on CNN Ireport website”. We can all see how healing and inspiring their videos can be for many of us.

MEBO’s hope is to bring the whole international community together, to unite in sharing with each other so that we can support each other, and when research opportunities come along, there will be plenty of us to help the scientists help us on a voluntary basis only.

María de la Torre
President and Executive Director


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