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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

Sunday, January 11, 2009

Our first Conference Call of 2009

We held our first bi-monthly conference call of the year 2009 today and much was discussed about our goals and expectations for the upcoming year. The topics discussed were the following,

*Migration to our new forum
*Invitation to create personal mini-blogs in Multiply
*Pending publications
*Establishment of a Charity to fund research

Migration to our new forum

In this call, we discussed at length our upcoming migration to the new forum with all its new features. Some of us went to see it and were very pleased with this new forum that Kristen and Matt created to try to meet our needs as prescribed by Arun. The speed with which this forum has been built due to time constraints is indeed impressive. It was so impressive that it turns out that a few of us rushed to register before it was ready and open for registration.

Since our three-hour long chat Arun, Kristen, and I held yesterday in the forum’s chat room, I suggested to the group that we hold bi-weekly chat sessions at this site so that our international and U.S. friends who can’t afford to join us in our conference calls could do so in this setting. This will only serve to bring us all more together. The idea was received very enthusiastically, and these chat sessions will begin as soon as the forum is opened to the whole community.

Kristen has informed us that the photo gallery section has not yet been completed, but photos can be posted within a post. We currently have the opportunity to store our photos, videos, and personal blogs in Multiply, and link to them from our new forum for now.

Invitation to create personal mini-blogs

After having finished writing poems, essays, and short stories for our anthology, Glenna suggested we initiate a new project to raise social awareness by organizing a social awareness campaign to educate the public of our condition and its negative social implications. Each member of our community is therefore encouraged to create his or her own personal blog, or mini-blog, in Multiply making it as unique as each individual in our community is unique, in an effort to give us an opportunity to communicate whatever we think is important about our condition to each other and to the world.

There is no prescribed format to follow and no need to limit ourselves to any specific topic or style. We can continue our literary expression in our mini-blogs as we did in our anthology. We can either take the personal approach as Kristen and Olive did with their respective blogs; or we can take a more scientific approach as we originally did with this blog liking to scientific articles.

Your personal blog can evolve as you evolve in whichever direction you want, as ours did by also becoming a community organizing support site of meet-ups and conference calls as well. Of course, pictures and photos, whether of ourselves, interesting places, YouTube videos, or media clips are encouraged in personal blogs, as a picture says a thousand words. In addition to our anthology, the more blogs are created by sufferers, including mini-blogs, the more information we will have at our disposal to work with in our social awareness campaign.

Pending publications

There are two publications in the works, our anthology and an inspirational book written by our own, Glenna Gonzalez. If Glenna writes as well as she speaks, I’m certain that her book will captivate the readers and take them on a journey.

Establishment of a Charity to fund research

Our discuss then shifted to the organizational effort of our charity fundraising and research effort for 2009. The objective of establishing a non-profit organization is to promote and raise funds for scientific and medical research of the causes and treatment of metabolic disorders and conditions and secondary causes of localized and generalized body odor disorders and conditions in order to find a cure.

Due to limited funds, we begin with the establishment of a Limited by Guarantee Company in the UK,, which will cost £195 (approximately $295.00/U.S.), including the yearly services of a Company Secretary. Our long-term goal is to establish a Charity in the UK,, which will cost £1,000 ($1,510.00) to £1,500 ($2,265.00). Our long-term goal is to extend this Charity to an international level with branches or affiliates located in many countries of the world.

Once the Limited by Guarantee Company is established, a business bank account with HSBC will be opened, and a PayPal account and linked to the company website and my blog in an effort to fundraise. The proceeds of our anthology will be deposited in this charity bank account. Since we don’t expect the initial donations to be substantial at first, we hope to be able to organize research at a smaller scale funded by the non-profit company. As we grow and enough funding is obtained to register as a Charity, we will then pursue a more assertive fundraising campaign for sizeable research grants from various governments and private Foundations.

We have many goals to fulfill by the end of this year. In December of 2009, we will again take pride in our accomplishments as we did this past December of 2008.


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