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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

Wednesday, August 13, 2008

Our Women's Conference Call tonight touched our souls

As we entered our coming together as women of odor and reached out to each other from our solitude in a desperate attempt to encounter closeness, compassion, support, and guidance, an incessant, reverberating, universal pulse beat amongst us as it echoed in the caves of our souls. Here we poured out our innermost burdens, and in that moment of fleeting union, we somehow found strength to carry on.

“As I grew up, I saw myself looking through my window to an outside world I couldn’t be a part of…I waited for the other kids to finish playing, knowing that then it was my turn to go out when they were gone…it is too painful,” said one voice that spoke for all. “I have to force myself to leave my house to go get groceries…we have to take it because we have kids we want to take care of,” said another.

Then another voice spoke out, “How do you get to the next stage?” one answered, “I’m in the anger stage, the 'Why me?' stage” Another replied, “We need to take control of our lives by setting boundaries and limits and being selective with who we push away and who we let inside. Sometimes in our quest for refuge into isolation, we end up pushing away those who want to give us the love and support we so desperately need.”

We all left this call knowing that it was just the beginning of a journey we will pursue together to get to the next stage, and the next, and the next. We walked away knowing that a tiny seed was planted in each of us that will grow as we continue to nurture it together, just as we nurture our children and cultivate our homes.


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