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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

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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

Thursday, May 8, 2014

Current wait time for MEBO TMAU Test Results


It is frequently difficult for sufferers to decide to test for trimethylaminuria,(trimethylamine in urine test.)


Questions that frequently come to mind are,

  1. How do I ask my doctor for the test (where available)? What do I do if he or she doesn't take me seriously and won't order the test for me if required by a National Health Service or private medical insurance?
  2. Is testing going to be expensive?
  3. Is the testing process very complex, and consequently does it have a greater possibility for error?
  4. The urine TMAU Test requires a choline challenge to increase my odor symptoms to their maximum. Do I really want to subject myself to this? How long will it take for the odor to decrease back to at least my normal, or for me to ever get rid of it altogether?
  5. How accurate is the urine test?
  6. Once the decision is made and the sufferers submits urine samples, the most important question becomes, "How long will it take for me to get my results?"

These are all very valid questions and concerns, and there are many possible answers depending on what country one lives in and how cost effective it is for the lab to analyze a batch of samples. It is potentially very costly for the lab to stop whatever other work performed by the instrument to then use it to analyze our urine samples. Therefore, in an effort to keep the price of testing down for sufferers and to address the cost effectiveness of the test to sufferers and lab, MEBO and the lab arrived at an agreement for tests to be performed when there are enough samples in a batch to to merit setting up the instrument to analysis the samples. For this reason, MEBO has agreed to send them 15 to 20 samples at a time in one batch, so they can take advantage of any opportunity within a month's period to send MEBO back the results.

Below is a brief time table of Batches 1 through 10.

BATCH #1: (40 SAMPLES) were sent to the lab on July 18, 2012, the lab received it the following day, and MEBO received the results on August 22nd.

BATCH #2: (24 SAMPLES) were sent to the lab on September 14, 2012, received the following day, and MEBO received the results on October 17th.

BATCH #3: (22 SAMPLES) were sent to the lab on November 15, 2012, received the following day, and MEBO received the results on December 5th.

BATCH #4: (15 SAMPLES) were sent to the lab on February 24, 2013, received the following day, and MEBO received the results on March 4th.

BATCH #5: (20 SAMPLES) were sent to the lab on March 28, 2013, received the following day, and MEBO received the results on April 24th.

BATCH #6: (20 SAMPLES) were sent to the lab on June 3, 2013, received the following day, and MEBO received the results on June 26th.

BATCH #7: (16 SAMPLES) were sent to the lab on September 24, 2013, received the following day, and MEBO received the results on October 29th.

BATCH #8: (15 SAMPLES) were sent to the lab on January 13, 2014, received the following day, and MEBO received the results on January 31st.*

*Due to the Arctic blast that pushed subzero temperatures into the Midwest and Eastern US in December 2014 and January 2014, UPS warned of shipment delays due to interrupted service, so MEBO delayed in shipping the kits to the lab to protect samples.

BATCH #9: (15 SAMPLES) were sent to the lab on March 20, 2014, received by the lab the following day, and MEBO received the results on April 23rd.

A lab in Brazil, DLE-Medicina Laboratorial, has joined the MEBO Urine TMAU Test Program and commenced testing on January 6, 2014. Once they collect a batch of samples, they will ship them to MEBO in Miami, thus expediting the creation of the 15 to 20 samples required for MEBO to ship batches to the lab. DLE also performs FMO3 genetic testing. This is the first South American lab that we have found that will carry out TMAU testing.

BATCH #10:MEBO has received 14 samples since March 21st, including the 7 samples sent by the lab in Rio de Janeiro, DLE. Hopefully, we will receive at least one more set of samples next week so that the batch can be shipped to the lab on Thursday, May 15th to be received by the lab on Friday, May 16th.

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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2 comments:

Unknown said...

Is there someplace in the United States that do this type of test (Baltimore, MD)?

Oct 25, 2018, 8:28:00 PM
blogcontributor2 said...

only CHILDRENS HOSPITAL OF COLORADO
LabClientServices@childrenscolorado.org

https://www.childrenscolorado.org/doctors-and-departments/departments/pathology-laboratory-medicine/lab-requisition-order/#collapse-40466

Oct 25, 2018, 8:41:00 PM
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