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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

Popular Posts (last 30 days)

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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, September 11, 2008

Join me on my trip to the Thames 2008 Festival Meet-Up!

As all of you know, I am traveling from Miami FL to London to attend Arun’s Thames Festival Meet-Up; and as most of you know, the goal of this blog is to unite sufferers of the various forums to come together to become a close community to empower us to find a cure. As I have said in my introductory post in this blog, “I would like all sufferers who visit and participate in this blog to be assured that I commit to doing everything in my power to protect your privacy and confidentiality throughout this process.”

Some sufferers have expressed to me that they experience a significant amount of social anxiety, and it holds them back from participating in meet-ups. Well, I was hoping to take my camera and take pictures (NOT OF ANY PERSON IN THE GROUP) to post them in my blog as I go along on the trip. In this manner, I can show everyone step-by-step what it’s all about. In fact, before I post any pics on the blog, I will ask someone in the group to ensure that no one was inadvertently included in the pics. By doing this project, everyone would share in our meet-up experience. I will also try to do an audio recording so that anyone in the group that wants can say something to the rest of the community in any of the posts.

I hope you all share in this journey with us. Hopefully, this will inspire more members to meet-up and feel good about ‘relaxing and chillin’ with other members throughout the world. Stay tuned for exciting events to come…

note :
no photos will be taken there without consent
no photos will appear here without consent


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