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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
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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, March 29, 2011

MEBO-Eliapharma TMAU Testing Update and next batch of tests

Even as we wait for the results of the 38 specimen of the 1st batch analyzed by Eliapharma, we already have an additional 12 samples for the next batch.
At this time, Eliapharma is writing the reports of the first 38 samples received for TMAU Testing for Primary TMAU, Secondary TMAU, or negative results.

Urine Creatinine Test: In addition to TMAU testing, Eliapharma is analyzing each sample to measure urine creatinine concentration levels to act as the reference point for measuring TMA and TMAO. This is something also done by Nigel Manning in the UK, as noted in his paper, TMAU - diagnostic testing at Sheffield Children's Hospital, which Nigel wrote for MEBO's Meetup in Nashville 2010.

A urine creatinine concentration level test can be done on its own or with other tests that determine the relative amounts of other substances being excreted in the urine. High creatinine levels indicate a pure test, whereas low amounts of creatinine in the urine indicate an altered test perhaps by drinking excessive amounts of water or taking medication containing diuretics. This additional measure to test the creatinine concentration in each specimen serves to ensure that the urine samples are of good quality. Normally, this test is done as a screening test to evaluate kidney function, but also to provide information on other chemicals in the urine such as albumin or protein.

Even as we wait for the results of the 38 specimen of the 1st batch analyzed by Eliapharma, we already have an additional 12 samples for the next batch. In addition, so far 5 people have expressed interest in providing a sample during the Washington DC Meetup on the weekend of the 9th and 10th of April, and others might decide to do the test as well once they’re at the meetup. So, by mid April, we should have close to 20 samples, and hopefully complete the 30 required to run the test by early May. As per our agreement with Eliapharma, the lab will analyze approximately 30 samples at a time.

If you would like to test in our MEBO International TMAU Testing Program, please fill the test following, MEBO-Eliapharma TMAU Test Requisition/Survey Form.

We are looking forward to receiving the results of this first batch of 38 samples sometime this week.


María de la Torre
President and Executive Director


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