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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

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MEBO Map Testing & Meetups

Full details :
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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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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

Friday, March 31, 2017

Updates on Clinical Trials NCT02683876 and NCT02692495

Irene Gabashvili, Director of MEBO Research
MEBO Metabolomic Profiling Study
Updates on Clinical Trials NCT02683876 and NCT02692495

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A EURORDIS and NORD Member Organization


Anonymous said...

Thank you. Very interesting study and looking forward to the next phase. Exscuse my understanding but how do we find a cure once we discover all the compounds?

Apr 3, 2017, 6:35:00 PM
Irene Gabashvili said...

we need to define different sub-types of this condition as different treatment approaches will be needed.

Apr 8, 2017, 10:45:00 PM
Anonymous said...

Thank you Irene. Your reply has given me hope. We really appreciate all the work you do for us.

Apr 9, 2017, 8:42:00 AM
Ja za said...

Thank you Irene for all your work. It looks like you guys are the only ones that are looking into this issue. Two questions:

I understand amino acids can break down and cause these odorous compounds but do you have a theory on why the majority of suffers respond negatively to sugar? Somrthing like a fruit juice causes an instant reaction for me.

I see that the majority of participants were low in certain aminos, is this because a faulty pathway is not utilizing the amino acids properly and therefore being released as odorous compounds instead of being properly utilized by the body?

Apr 16, 2017, 3:18:00 PM
blogcontributor2 said...

I would suggest the best way to comment to Irene is via her youtube channel (Aurametrix)

Apr 18, 2017, 3:21:00 PM
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