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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, April 17, 2012

Alveolar breath testing in Chicago : scheduled April 21 & 22

MEBO - Menssana alveolar breath exploratory study : Chicago 21-22

Chicago testing : 21 & 22 April
If you would like to test then contact mike@meboresearch.org
First testing of the Alveolar breath exploratory study is scheduled to take place in Chicago 21 & 22 under the guidance of MEBO's Managing Director Mike. It is hoped testing can continue in various locations over the year with the hope that a 'trend' may appear that will take the systemic malodor community a step further than the only test currently on offer; for trimethylaminuria.

Alveolar breath is breath that has circulated systemically and is expired from the lungs. For that reason it could be a good way of spotting compounds circulating in the blood. This means it will probably be most suitable for anyone who thinks they have a body odor or halitosis that is systemically sourced (i.e. a metabolic malodor problem).

The Menssana breath capture apparatus used to collect samples can only detect compounds containing more than 3 carbons. This means it will miss a few 'prime suspects' we would be looking for that are FMO3 substrates, such as trimethylamine and dimethylsulfide. However it seems FMO3 substrates can have more than 3 carbons, so it is hoped perhaps some will be spotted (if FMO3 is an issue).

However, it must be kept in mind that this is research into a new area and it is not known what or if anything will be of any significance. Expectations are best to be kept low for the study. Each sample will be tested for 200 compounds.

Unfortunately due to no funding, any volunteers will need to pay their own sample to cover the costs. Currently this is set at $345.

It is hoped that testing can occur in various locations worldwide. Apparently training for the test and testing is relatively simple. It involves blowing into the breath apparatus for a few minutes and then the canister is sent to Menssana for testing. This will be the first testing. Provisionally, it is planned to take place in a library private room. If you would like to know more you can contact Mike at mike@meboresearch.org.


Or use your credit card to make your donation

A EURORDIS and NORD Member Organization 

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