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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

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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

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to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

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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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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, June 22, 2010

MEBO Research: Past, Present, and Future


MeBO-BIOLAB GUT DYSBIOSIS STUDY

Were we've been, where we are now, and where we're heading
PAST
In addition to a total lack of funds needed to carry out any type of study/research, and after unsuccessfully attempting to get scientists interested in researching causes and treatment of the various body odor conditions, we at MEBO Research took the initiative to take matters into our own hands. In the same spirit initiated by Arun Nagrath in his Survey in 2008 in which he attempts to gather as much data as possible regarding our condition to potentially be used by scientists in future research, MeBO decided to begin a community self-study initiative. In the initial phase, this effort began with setting up a small study through Biolab Medical Unit (UK) to test of a few biomarkers of various types of gut dysbiosis.

For almost a year prior to this study, MeBO approached various scientists who wanted to help with research if we could only provide funding. One of the doctors was initially willing to write a grant proposal for us, but as we explored research options, it was determined that aside from TMAU, it became evident that basic data categorization of specific volatile odorous compounds have for specific body odor types has never been compiled in a scientific manner, and that categorization of the various body odor types is also nonexistent. In the absence of this data, there is no clear starting point or hypothesis with which to begin serious research.

PRESENT

This very valid reality was a clear indication that research would never take place and thus, we would never get answers to the causes of body odor conditions not only in non-TMAU sufferers, but also conditions TMAU sufferers may have in addition to their genetic disorder. Consequently, it became very evident to the MeBO staff that we would need to initiate sufferer-driven and sufferer-funded studies to look for patterns so as to begin to gather, compile, and classify data with which we can then use to pursue grants to fund large scale research projects. Thus came the birth of our MeBO-Biolab Gut Dysbiosis Study in mid August 2009.

This exploratory study to evaluate potential screening tools for yet uncharacterized digestive and metabolic disorders responsible for body odor or halitosis is currently recruiting participants.
Thanks to the invaluable guidance of the expert overseeing this project,Dr. Irene Gabashvili, and thanks our international test subjects, 11 subjects who have already submitted their samples and 4 additional subjects that are initiating this testing process, all of whom have paid for their own tests, and thanks to the special rates provided by Biolab, we are beginning to gather data of tests results performed by reputable labs in London. As the results continue coming in, Irene is writing a hypothesis for publishing. We are fully aware of the limitations of this study, such as not having a control group to compare results with due to lack of funds, and as we go along and begin to see patterns in the test results, the initial test profile will be modified by possibly removing some tests from the list and adding more on-target ones. The survey questions for the study may also be modified for better control and interpretation of test results.
FUTURE

Where is this movement heading? This exploratory study to evaluate potential screening tools for yet uncharacterized digestive and metabolic disorders responsible for body odor or halitosis is currently recruiting participants. With the consequent hypothesis proposed by Dr. Gabashvili and the data used to support it, we hope to be in a better position to obtain a grant from private foundations and government agencies to further expand this study to a larger scale research project with a control group. With this and similar kind of data compilation, with MEBO Research being registered as an international non-profit organization in the US and UK, we stand as an international united community of sufferers and experts, and we face a much better chance of obtaining research grants than if we had not united and had taken no action at all.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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A EURORDIS and NORD Member Organization

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