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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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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

Thursday, April 14, 2011

Highlights of MEBO’S 2nd Annual Meetup, Washington DC 2011

The experience we shared at our meetup in Washington this year was absolutely amazing, wonderful, life-altering... and it touched each of us deeply in a very special way. I couldn’t help but see the palpable changes in the facial expressions of those persons who had attended the meetup last year in Nashville. There was a more relaxed, self-assured, peaceful demeanor about them, as they seemed to be more empowered by the greater degree of knowledge we have all obtained since then, and the strong support we have given each other through our trials and burdens throughout the year.

There were many new faces in Washington, some of whom initially seemed to be in dire straits desperate for guidance in employment concerns, understanding some of the causes of body odor conditions, current available treatment options, and information of potential research theories, all of which were addressed by the experts who gave us so much literature and presentations, that we just couldn’t present them all. As the conference unfolded, the stress on these new faces just seemed to be soothed with the information, kindness, and support given, and bright-eyed smiles replaced them. In some cases, tears of joy where shed from time to time.

It wasn’t only the much appreciated information provided by experts that touch our hearts, it was the sharing of sincere kindness and concern we gave and received from each other as we broke bread at breakfast, lunch-dinner, and even our “Happy Hour” with drinks and snacks during our Manager’s Reception. The restaurant servers were very patient with us as we just wouldn’t leave even as they cleaned the area around us after it was all over. We wanted to cherish the moment forever.

The strong support we all felt from the four experts who provided information for the conference part of our meetup held on Saturday, Drs. John Cashman, Elizabeth Shephard, Nigel Manning, and Cheryl Fields, was not only emotionally uplifting, but the wealth of valuable information they shared with us and the presentations they gave us out of the compassion and kindness of their hearts was nothing less than overwhelmingly uplifting. We are profoundly grateful to them for their kind generosity; it is indeed deeply appreciated.

Then on Sunday, those who were able to do so went to the National Mall area to visit the sites. Some went to the various Smithsonian Institute Museums and eventually headed towards the Washington Monument, Lincoln Memorial, saw the Jefferson Memorial from a distance as the paddle boats strolled along on the Potomac River, we paid homage to the three wars memorials, the Korean, Viet Nam, and World War II Memorials. A group of us then took a cab to Georgetown as we strolled through the shops and restaurants, and of course, had our tasty cupcakes.

In sum, this year’s meetup had 3 main focuses: Mind, Body, and Soul; and all three were stirred and revived by the time we returned to our respective homes spread out throughout the country. Of course, we can’t just seem to leave one meetup without discussing the next one to look forward to, and one could hear the resounding sounds of “Miami” and “London” in the air…

Thanks to all for the special encounter you have shared with me. It will never be forgotten.


María de la Torre
President and Executive Director
A Public Charity
MEBO's Blog (English)
El Blog de MEBO (español)


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