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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

Wednesday, March 27, 2013

Meetup: Villa in Netherlands in July 2013

Boys and girls, children of all ages,
we are proud to introduce to you the first meetup in

"da Netherlands in july 2013"
(July 15th)

So I was going to visit a couple of sufferers in the summer, this has now escalated into a weeks long holiday. The plan is to meet on July 15th at Amsterdam airport where we will collect everyone. Then we will drive to a villa near Amsterdam. We have found a range of villas for between 6 and 10 people depending on how people confirm. The villas have pretty cool facilities including swimming pools and saunas, one is near the beach. Check out the links below.

It will all be self-catering, so people can choose the diet that most suits them.

The villas will give us a chance to work on our tans without having to feel self-conscious. Plus, I'll be getting my chefs hat on and getting the BBQ going. So during the day we can lounge around and have a laugh then at night we can scooter into Amsterdam and enjoy the night life. Obviously, as always, everyone is free to come and go as they please.

As this going to be a bit pricey, we are asking people to pay a deposit of £100 into Paypal account ( We will then pay the balance on the property, and people can pay us the difference when they arrive. The villa prices range from 200-300 per person.

As we need to book asap to guarantee availability we are asking people to pay the deposit by the 7th of April.'

If anyone has any questions they can contact me, AJ, on Facebook, or give me a ring on 07564352288.

I think we all deserve to have some FUN!


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