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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

Friday, April 17, 2009

Women's Conference Call Synopsis from Glenna

Last night, our women’s conference call was full of synergy and energy. We had a lot of fun, so much fun that the call lasted 3 ½ hours. I want to thank Melissa for all of her help in creating so much energy and enthusiasm during the call. It was great to have Debra from Canada on. Debra is one of the sweetest people I have ever known. Jessica brought laughter with her on the call, as she usually does on any call she participates in. Cheryl was on and really happy that she had a chance to talk to “adults” she stated. It was great talking to her on her first women’s conference call. Cheryl just joined our board, within the last month. Theresa and Ms. Trish found that they had some similar issues in common and brought some comfort to each other. (I apologize to anyone that I may have missed here.)

We discussed several interesting issues. Among those issues, we talked about therapists, and shared information regarding past experiences with them. Cheryl and Jessica discussed a work at home project. Cheryl has a lot of experience making crafts with magazines and Jessica suggested that she could experiment with shoe boxes, using them to make purses, etc. That was really interesting and Cheryl thinks she can work with the information she received. We discussed the usual topics like “friendships,” and “diet.” All in all, the conversations were great and we all had a lot of fun!

My sincere thanks to everyone that made it on the call! Honestly, I felt a divine moment or two pass as we talked and giggled late into the night. I am sure that most of us were exhausted, but the experience was so totally worth it! Anytime we can come together and share our hurts, triumphs, desires, etc., it is truly a divine situation, in that no one else can understand us, like we can understand each other. I look forward to the next call and I hope that we will have even more women on the call.

Cheers and Best Wishes,


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