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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, May 12, 2020

4 SelenBP1 variants in Halitosis Study



2017 paper by Prof Ron Wevers et al ...
Said a gene caused a type of genetic Metabolic Halitosis.
gene : SELENBP1

Prof Wevers et al suggested 4 SELENBP1 variants may explain this type of Metabolic Halitosis

The paper is paywalled, but it is believed the 4 variants are :

                                normal
Rs1357490520        GG
Rs1553204840        CC
Rs1553204817        GG
Rs758495626          GG

If you have DNA exome/genome/snp results, you might be able to check for these variants

23andme (a snp test) lists SELENBP1,
but looks like it does not list these variants.
Only 23andme testers can see the link :
23andme site: or you can search the rs numbers

exome/genome tests should in theory list them

reference
Radboud Uni Ron Wevers article

An uneducated opinion on SELENBP1 in the METABOLIC MALODOR spectrum
Some may feel given FMO3 wide use as an oxidizer, it is perhaps seen as still the most obvious type of metabolic malodor, but greatly underestimated.
SELENBP1 may turn out to be more a rarer niche type (?), but this could be very wrong (especially the 'rare' notion) !

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A EURORDIS and NORD Member Organization

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