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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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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

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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, August 16, 2016

Launching Metabolomic Profiling Research Study

Update on the

Canadian Metabolomic Research Study

All 27 sufferers in Canada who consented to be participants in this study will receive their kits very soon.

I am excited to announce that we have received an email from the PhD in charge of the Metabolomic Profiling Study in Canada, NCT02683876, who tells us the following,

Hello All,

Just wanted to give you an update on the status of this project. The urine collection kits have now been sent out to the participants. I will keep you updated when all samples have been received.

All 27 sufferers in Canada who consented to be participants in this study will receive their kits very soon. Please make sure you follow the instructions carefully in order to obtain accurate results.

MEBO requested from the lab that each participant of this pilot study receive his or her own results report, even though the data probably would not mean much initially. We don't know for certain whether this will be the case. The results may have noteworthy meaning only after the study has been underway for quite some time and after all participants' results have been compared to the control group of subjects who do not have breath/body odor conditions.

There is no guarantee that there will be any significant data since this is an exploratory study, but we sure hope there will be data that will ultimately help sufferers, especially those who tested negative for TMAU and have no other recourse. Let's hope and pray that this metabolomic study will help many sufferers around the world for years to come.

Updates to this program will be posted in this blog as they are provided by the research lab.  MEBO thanks all the participants of this study who have made this possible.


María de la Torre
Founder and Executive Director

A Public Charity (em português)
MEBO's Blog (English)
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