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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, May 8, 2018

MEBO awarded a study grant from UBIOME

MEBO has been awarded a grant from Ubiome.
It was awarded via the Ubiome Academic Grant Program.
The award means a study can be done with a number of free Ubiome kits.
It will explore the MICROBIOME using the Ubiome stool test.

An outline of a potential study was put forward to Ubiome by MEBO's Prof Irene Gabashvili and accepted :
This involved 30 volunteers getting 2 Ubiome stool test kits.

"The proposed study would identify microbial communities associated with flare ups and remissions of systemic malodor".
This will now include 'People are allergic to me' (PATM).

Talks are underway about formatting a study.

Some ideas that have been discussed :
Ubiome offered to make it 3 tests per person.
The current Ubiome stool test is bacteria only, and does not include fungus (e.g. candida). Ubiome will look to include candida (albicans ?).
It will also be asked if they could include small parasite microbes.;

Planning the study is at a very early stage. One big question is how to identify between remission and flare-ups, as many cannot smell themselves so cannot monitor their condition.

Prof Gabashvili blog post and survey
Irene has begun formulating a questionaire; for the study, and has wrote a post on the Aurametrix website on the study.
Prof Gabashvili Aurametrix post on the study : link
Currently the survey is for discussion purposes only (not to be filled in).

This is early formulation of a study with discussions with Ubiome.
It should be kept in mind it has many limitations, not least due to the early stages of microbiome knowledge and testing, as well as cost. and being limited to this test only.
Ideas and comments are welcome.

Excerpt from original proposal put forward by Prof Gabashvili and accepted :

The proposed study would identify microbial communities associated with flare ups and remissions of systemic malodor.

Human odorprints, mostly owing to the microbiome, have proven their value as biomarkers of health
and environmental exposures.
In recent years, microbial networks responsible for localized malodors (e.g., halitosis [1,2] and axillary
odor [3,4]) have been mapped by using next generation sequencing approaches.
Intestinal microbes responsible for psychologically debilitating systemic malodor (whole-body and
extraoral halitosis), however, remain to be identified. Even a relatively straightforward disorder of
choline metabolism trimethylaminuria (TMAU) is thought to exhibit complex host-gene microbiome
interactions [5] and has not been sufficiently studied.
Mapping gut microbiome is needed to understand human metabolic disfunction, make proper dietary
recommendations and develop targeted treatments such as microbial therapies [6-8]. Our preliminary
analysis of culture-, PCR- and 16S-RNA-based data found several Operational Taxonomic Units (OTUs)
potentially linked to systemic malodor. Proposed controlled pilot study will provide a more
comprehensive evaluation and, combined with our prior data [9-12], will help to develop new therapies and treatments.

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