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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

Thursday, March 10, 2011

Recent developments in the Washington DC Meetup

Much to our dismay, in order to get the tickets for a tour of the White House, MEBO Research would need to fill out one spreadsheet given to us by a Congressional Aid answering personal questions about each visitor attending the tour. It wouldn't be so bad if it was just the name, address, and phone number, but it gets very involved, including each person's Social Security Number required by the Secret Police that guards the White House and the president and his family. Even that might be understandable if they would ask each individual to submit this information personally via fax maybe; but instead, they want everyone to give their Social Security number to one of MEBO's representative for this person to create a list of each person in the group's Social Security number along with other information, so that the MEBO representative would then email the spreadsheet with all this information to the Congressional Aid.

Well, I am truly sorry, but I think that is treading on very dangerous grounds for everyone involved. I would prefer not to receive anyone's Social Security information, or to send it to someone via email. That is an invitation for hackers to have a field day with us. So unfortunately, the White House part of our Washington experience as a group will be cancelled. Therefore, I think it would be a good idea to perhaps meet at the hotel for our conference after breakfast, around 10:30a.m., and after lunch, we can decide where we want to go visit in the city. There are so many places to chose from near the hotel for lunch and then places to visit, and perhaps the weather may be a determining factor as to where we should begin.

Afterwards, at 5:30pm, we can return to the hotel for the Manager's Reception until 7:30pm to then go to dinner, and we'll ad-lib it from then on through the evening.

Sunday would be more of a social day, and after breakfast, we can meet again for follow-up discussion on the presentations and to have the opportunity for open discussion about what we've learned from each other regarding the different types of body odor conditions and what it's like to meet other sufferers, etc. Once that is concluded, we can spend time together for lunch and visit sights as the day takes us. Some may be leaving us on Sunday, and others are staying the night to return home on Monday or later.

The aim of the meetup is three-fold - to learn about some of the latest developments and management options of the various types of body odor, to establish close relationships with people with whom we share similar experiences, and to share these special experiences together amongst the beauty that surrounds us in the city and even in the hotel. The most meaningful aspect of a meetup like this is that it combines intellectual experience with an emotional and social experiences as a very special bond instantly forms and develops as we share time together. This healing process always happens when we meet with people whom we know have had very similar experiences day in and day out living with this condition. We already know what each other have been through without even having to mention it. And to add another very special element to this bonding experience is to be amongst the beauty of our surroundings in the spacious and inviting hotel lobby and in the city we visit.

I wish everyone in this community from around the world could make it. I know we will be having some new visitors from oversees this year, and I wish more would come as well. If you are planning on coming from a distant country, please let me know to see how I can help with your journey.

See you all soon!


María de la Torre
President and Executive Director


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