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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

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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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

Monday, December 5, 2016

MEBO TMAU Test Program United States only

Click on MEBO Map to see where TMAU testing is in the world 
Please notify of other sites to maria@meboresearch.org

It is with deep regret that I announce that MEBO will not be shipping the TMAU test international for the time being for the following reasons.
  1. The cost of the test plus round trip shipping is within the $300+ to $400+/USD, which is too high for some countries who have a low currency exchange against the US dollar. Most often, the shipping cost is the same as the test itself ($150/USD) or significantly higher than the test cost.
  2. Many countries like China, Australia, Brazil, Singapore, and others do not allow either payments made to a charity of a foreign country or do not allow the kit to enter their country, or do not allow the test to be performed unless a medical doctor in their country to prescribe the test.
  3. Due to numerous reasons, Custom Agencies may delay the 2 day sample shipment to enter the United States, thus resulting in the samples being too long at room temperature or higher, and thus, may give spurious results.  After paying the much higher rate than the US sufferers have to pay, there is a significant risk that the samples would be damaged in transit to the United States, and this is unacceptable.

I was my intention to provide TMAU testing to all sufferers around the world, but very few indeed have actually been able to do the test because of the reasons stated above. Thankfully, more and more labs around the world are offering the genetic test, though very few other than the United Kingdom that I know of, are offering the urine test.

The genetic test obviously checks for Primary TMAU, a genetic mutation resulting in a deficient FMO3 metabolic enzyme function, thus allowing for high levels of the odorous trimethylamine (TMA) chemical in the blood. That I am aware of, only MEBO and the UK Sheffield lab offers the urine test that also tests for Secondary TMAU, which is the result of an overproduction of TMA in gut bacteria that overloads a fully functional FMO3 enzyme, thus allowing for high levels of TMA in the blood. Both Primary and Secondary TMAU have high TMA body odor symptoms, though with different causes.


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

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