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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

Wednesday, February 5, 2014

MEBO TMAU Test Program Results: BATCH #8

Click on icon to see chart

The MEBO Research TMAU urine test program was launched in June 2012, and 172 tests have been analyzed. The results of Batch #8 TMAU urine tests were received on January 31, 2014, and all the individuals tested received their respective results within two days after MEBO received all the results in a spreadsheet from the lab.

Of the 15 samples in Batch #8, three were indicative of Primary TMAU (TMAU1) and four of Secondary TMAU (TMAU2), as compared to Batch #7, which had only one TMAU1 and five TMAU2. The results of each batch seem to be different from each other. The more tests are performed, the better we get a clearer picture of averages.

As noted in the comparison chart, which presents the highest to lowest figures per category, TMA, TMAO, TMA/TMAO Ratio, the following are the averages of all the results of 172 tests:

Primary TMAU (TMAU1) Positives: 8.14% (14 of 172)*

Secondary TMAU (TMAU2) Positives: 28.49% (49 of 172)

TOTAL TMAU POSITIVE: 36.62% (63 of 172)

TOTAL NEGATIVE FOR TMAU: 63.37% (109 of 172)


*Please note that 4 of the 14 TMAU1 positive results are repeats by the same people who wanted to see if TMA decreased with the TMAU odor-managment protocol. Even though their TMA levels decreased, the TMA/TMAO Ratio remained in the Above Normal Range, and thus indicative of Primary TMAU. Therefore, Primary TMAU, consisting mostly of genetic causes, is still considered a rare disorder with 5% or less (5 in 10,000 people).

The only way to confirm the genetic form of TMAU originally positive urine test is with a DNA test. See article written by Drs. Elizabeth Shephard and Ian Phillips, "Differential Diagnosis" in NCBI, NIH pages.

Although it took longer to get the test results for Batch#8 due to extreme arctic weather conditions in the Eastern and Midwestern US this winter, thankfully, no samples were damaged, thanks to the care and patience of everyone involved.

For more information, please see all the posts in this blog regarding, the TMAU Test Results.

How to test for TMAU with MEBO :


HOW TO ARRANGE FOR MY TMAU TEST
Click here

TMAU Test Requisition Form

No additional cost throughout the test process will be incurred
after initial payment of test & round trip shipping

María

María de la Torre
Founder and Executive Director

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



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A EURORDIS and NORD Member Organization

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