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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
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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

Monday, December 8, 2008

Let's start to prepare for our Miami Beach Meet-Up!

Hi everyone, this is María. In today's conference call we discussed at length about what to expect from the Miami Meet-Up experience. This event will be held on May 2nd and 3rd, 2009. I would like it to be the Miami version of the wonderful experience I had at the Thames Meet-up in London on September 2008, which was organized by Arun. Arun is an expert at doing this, and I think he did a very good job of creating the situation in which we can bond and we can talk and we can learn from each other while at the same time, enjoying the beautiful surroundings.

I think this meet-up will give us an opportunity to have a great deal of communication as a group, as well as in our private conversations with each other because it’s a relaxed, laid-back setting. We could sit under the coconut trees, near the volley area where whoever wants to play volleyball can play volleyball or throw a football or a frisbee. We can also walk across the street and sit under the umbrellas to get drinks and snacks, if anybody wishes to do that or we can bring our own snacks as well. And then we can just soak in the salt water for a while, that’s very healing and warm. Usually around May it’s pretty warm. In this setting, we can just share a great deal of information about our condition, and strong bonds of friendships will be created as they were in London.

So the big question that was asked today in the conference call is where to stay in Miami Beach?

Well, first let me explain a little bit about Miami Beach.

SOUTH BEACH, which is also known as the Art-Deco District of Miami Beach begins from 5th Street through 16th Street on Ocean Drive. While driving north on Ocean Drive, you’ll have the beach on your right and the Art Deco hotels and cafés to your left. As you continue driving north, Ocean Drive becomes Collins Avenue on or about 15th Street.

SURFSIDE, FLORIDA is on Collins Avenue and it starts around 88th Street to 96th Street. If you’re going to get accommodations around the Surfside area you can try to do that near Collins Avenue which has the beach to your right as you head north. Some bed and breakfasts as well you can check for those as well.

I would suggest you check online for accommodations in those particular areas, and then when you find something you like, you can call the owner or the person in charge of managing the property, and tell them that you would like for this person to meet with Jess and me, get a phone number where we could call to arrange to see this person, and we’ll take a look at the property and we’ll let you know if it really looks as nice as it is advertised online.

The good thing about condos is that they come with a full kitchen, but the obstacle there could be that they require a nonrefundable deposit.

Hotel rooms, on the other hand, whether they are in the Art Deco District South Beach, or in Surfside the oceanfront Best Western, they would just require a credit card to guarantee the room and to guarantee the rate. They won’t charge your credit card until checkout, and I believe you can cancel almost up to 24 hours or 48 hours, depends on the particular property [usually without a penalty].

Once you have determined the accommodations you prefer, then before you really commit it’s best to check for your Air, if you’re flying down, check with online agencies like, Travelocity, or Priceline. They seem to have the best rates. But keep in mind that the airfare is nonrefundable, nontransferable, which means that you cannot give it to other people, and they usually have penalties for changes.

PLAN AHEAD, especially for the Miami area because in April and May is Spring break time for most universities in the United States, and they love to come to the beaches. So let’s plan ahead to get the best deals.

We’re going to have THE TIME OF OUR LIVES TOGETHER!!!

It’ll be a very memorable experience.

See you then,


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