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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

Tuesday, September 16, 2008

My weekend at the London Meetup

Hi everyone I am back in the States. I had such a great time over the whole weekend, and the two days at the meet-up at the Thames Festival were great. I met 15 people there, 6 of whom had never attended a meet-up, and not one of us could smell each other. We met under the umbrella, it was easy to find each other, and we walked to the other side of the festival along side the Thames and sat outside surrounded by musicians performing and food stands all around selling foods of all kinds from around the world. We talked and got to know each other well very quickly – probably much faster than if we had not shared a common malady. I'll be writing many posts in the following days about all the very interesting things we talked about; but mostly we just enjoyed being normal and wandered around the festival taking it all in.

Then, we strolled along the riverfront as we saw the boats racing, the musicians playing their instruments, the vendors selling their arts and crafts and ethnic foods. We reached the London Eye where there was an amphitheater along side of it with live entertainment and great food and drink stands all around.

On the second day, we took a cruise on the Thames that left the hotel where we had gathered at one end of the festival, that took us all the way to the other end of the Festival. It was a beautiful, bright sunny day with a cool breeze that induced a serene sense of well-being. We saw thousands of people along the waterfront enjoying the festivities. Then we went to a pub on the upper deck of one of the ships that was docked on the river, and talked for what felt like a lifetime. We talked as if we had been life-long friends who shared our deepest thoughts knowing they would all be understood by everyone.

We walked clear across to the London Eye again, got our dinner and drink, threw a blanket on the green lawn and listened to the sounds of the music from the amphitheater and the bustle of the people all around as we watched the sunset. We enjoyed the show under the stars until it was time to go.

Sadly, it is now over. We can only look forward to the next time when we’ll meet the same faces again and hopefully many new ones.


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