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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

Popular Posts (last 30 days)

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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

Thursday, August 22, 2013

Last Call for TMAU Test BATCH #7

It appears that during vacations/holiday periods, there is an increase of purchases of the MEBO TMAU Test. At the same time, very few already paid samples are returned to create a batch of 15 to 20 samples to be sent to the lab for analysis.

Anyone wishing to purchase TMAU Test for Batch#7 must fill out online Requisition Form
Currently, 22 tests have already been purchased for Batch#7, but only nine (9) samples have been returned to MEBO. Therefore, anyone wishing to purchase their TMAU urine test in time to collect their samples over Labor Day weekend (Aug 30th thru Sep 2nd), and ship it back to MEBO on Tuesday, September 3rd, can fill out the online Requisition Form. It is important to collect at least 15 samples so that MEBO can send BATCH#7 to the lab on Thursday, September 5th, in order for the lab to receive it the following day. The lab will then take approximately one month to send us the test results.

It is important to collect at least 15 samples so that MEBO can send them to the lab on Thursday, September 5th
If anyone has difficulty with this online Requisition Form, please let me know via email at maria.delatorre@meboresearch.org.

Telephone calls may not be answered as quickly as email, so please keep this in mind if you want your sample to be included in Batch#7.



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
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)





A EURORDIS and NORD Member Organization 

2 comments:

Anonymous said...

Hello Maria,

I sent in my collected sample more than a month ago for batch #7 testing. How realiable would the results be being that it was collected and sent in so long ago? Does this long period of waiting affect the results of quality of the urine sample? That's one concern I have, being I would like to get accurate results as possible and hopefully not having to repeat this test.

Aug 28, 2013, 11:24:00 PM
blogcontributor2 said...

Maria is unable to reply directly herself at the moment. She asked me to copy and paste this answer for you

Message from Maria :
"Hello anonymous, I would like to answer you comment myself, but I am unable to do so as I'm at the hospital to wait for my father to pass away. Therefore, I have asked a MEBO volunteer to relay this message to you for me.

That I know of, the TMAU Test has been around since the 1990s, and frequently, samples have remained frozen for many months. I believe that scientists of the various labs around the world do agree that samples are very safe in a frozen state, since TMA turns into gas at room temperature.

In a post in this blog under the keyword, 'Cleveland Clinic Test' I outlined the methodology Dr Hazen and his staff carried out to design the test. Our program is designed to be very accurate following the procedures set forth by this test, which entails freezing the samples immediately after collection, shipping without ice for 2 to 3 days, and deep freezing until the batch of 15 to 20 samples are collected. The batch will then be shipped to the lab in dry ice using Next Day Service, where it will stored frozen until analyzed. It is understood that this process may take months before its completion.

I hope this address your concerns to your satisfaction.

Maria de la Torre "

Aug 29, 2013, 11:51:00 AM
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