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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

Saturday, January 21, 2017

MEBO 2017 Annual Meetup and Conference

MEBO 2017
Annual Meetup/Conference

Friday, March 31, 2017
at 12:00 noon; 8:00 p.m.
Penguin Hotel
Reserved Private Rooftop Terrace

1418 Ocean Drive
South Beach
Miami Beach, FL 33139, USA
305 534 9334

Our very own private terrace at the roof of the Penguin Hotel has been reserved for the MEBO South Beach Meetup/Conference 2017. It is a beautiful space with a spectacular view of South Beach, Lummus Park, and the ocean. The roof terrace is ours to use privately for MEBO throughout the day for the meetup/conference and later in the evening to enjoy the view and ocean breeze. It has a cover for shade and now has new furniture. We can get more chairs to accommodate everyone.

As you can see, it is a large space surrounded by palm trees and a nice ocean breeze in the Spring. The terrace is very private because no one can see us from the ground, but we can see them.

With an ideal oceanfront location in South Beach’s Art Deco District, the Penguin Hotel is a cozy and charming accommodation choice that contains an on-site restaurant and bar. Positioned on Ocean Drive, the hotel is just 15 minutes away from Lincoln Road Mall on foot, but it's easier to hire Uber (very inexpensive for such a short distance). It features free Wi-Fi in room and lobby, Restaurant, Bar (Only Valet parking for $), Washing machine, room safe, clean beach towels found at the lobby.

NOTE: Hotel deals sell out VERY QUICKLY for the Spring. 

  • Please reserve your hotel sooner than later, or it can get very expensive very quickly.
  • Some payment plans may include daily breakfast; double check whether your booking plan includes it.
  • Parking is always an expense at Miami Beach.  Best way to get around is on foot or Uber.

You can book your reservation for this meetup directly with the Penguin Hotel, if you want to stay there, or other recommended hotels nearby could be anywhere on Ocean Drive or Collins Avenue (5th Street to 17Street).  It's best to see the reviews of the hotels, and to check whether they have elevators or not, especially in the Art Deco District. Good sites to look for good hotel early advance booking deals are (check by ratings and cost),,, and others.

For deeply discounted rates, I recommend Rock Hostel, which is selling out very, very quickly. It's only a couple of blocks for the meetup.

In addition to being a special event in which sufferers meet each other and offer each other friendship and support, this meetup intends to provide sufferers with information on current and past research projects, to share odor management protocols for the various odor conditions. It is a great opportunity to share the beauty that surrounds us with South Beach literally across the street!

Spouses, partners, family members are welcome to socialize with us at the beach and to eat with us. Any of them who want to learn about odor management conditions can join the discussion, which will start at 12:00 noon on Friday. Some of us leave on the Jamaican/Grand Cayman cruise on Saturday, organized by Abbey Mcphaul Merriweather, but those who are not going on the cruise can make it a longer week vacation at South Beach!

More updates about the material to be discussed during the conference part of the meetup will be forthcoming in future posts in this blog.

I look forward to seeing as many of you there as possible.


María de la Torre
Founder and Executive Director

A Public Charity
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