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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

Sunday, February 10, 2013

5th TMAU webinar : Fennessey - Preti - Reed

5th TMAU webinar provided by Rob Pleticha and See additional answers to questions on the RareConnect site.

Paul Fennessey PhD :  Recognition of TMAU as disease entity and development of choline challenge test
George Preti PhD : Evaluation of individuals with malodor problems
Danielle Reed PhD : Genetics of TMAU

Our thank you goes to Drs. Reed, Fennessey, and Preti for their informative presentation. Since there wasn't enough time for all the questions to be answered, and since they requested that viewers submit questions for them to answer, we have copied and pasted the Q & A posted at this time in RareConnect. Thanks to all guests who also participated in asking very valuable questions.

Questions and Answers that we did not have time for during the webinar

  • Mar-----: Ok, my understanding of the methylation process is when some compounds receive a methyl group, this "starts" a reaction (such as turning a gene on or activating an enzyme). When the methyl group is "lost" or removed, the reaction stops (or a gene is turned off or the enzyme is deactivated). With this in mind, couldn’t it be possible, by having a specific methylation problem, the enzyme may be deactivated, thereby causing a lack of ability to metabolize TMA?
  • Dr. Reed: It is possible that the genomic DNA which codes for FMO3 could be blocked from transcription by either DNA methylation dynamics or through modificaiton to histones - or it could be that transcription factors which initiate FMO3 transcription are lacking in some patients. Right now there is no quick test to assess human FMO3 genomic methylation because it requires liver biopsy.

link to RareConnect site where additional Q&As may be noted.


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