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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

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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

Friday, June 15, 2012

MEBO Alveolar Breath Test Study in New York

This post has been written to assess interest
in New York City test location general area.



Exploratory Study
Requisition Form


NEXT TEST AT MIAMI BEACH MEETUP
JUNE 23rd - Only 8 days away!
Instrument may possibly not return to Miami afterwards

MEBO Alveolar malodor Breath Test Study

At this time, we are excited to announce that another test location has been established for the Alveolar Testing: the New York metro area. For the latest information on the benefits of the MEBO Alveolar Test, please see the post recently written by MEBO's Managing Director, "Update Menssana Alveolar Breath Test Study".



In some cases, the conductor of the test may be willing to come to the sufferers' home or make individual appointments.Due to the fact that the New York City metro area is a wide-spread and varied area, the exact location and date has not been announced until more people have expressed final interest in the test by registering with the Intake Form. At this time, it is most likely the test will be performed mid-August in Manhattan, however that information is subject to change to an area which best facilitates ease in getting to the test location for those who have made a final decision to test. In some cases, the conductor of the test may be willing to come to the sufferers' home or make individual appointments. Please express formal interest in this test by emailing 1. Any donations to the program may be tax deductible
2. Irene will review results of computational analysis and Alveolar Breath Test, and give an assessment/ interpretation of your health profile with Aurametrix.
3. We all know there is no alternative testing to TMAU
jason@meboresearch.org, or if you feel you could accommodate the price of the test, $345.00, and any test location within the New York metro area during the period of Aug 5-15, please proceed to the Intake Form.

We believe that this could be a once-in-a-lifetime opportunity to find what chemicals you indeed give off, leading to further clues as to your unique odor "signature." Already, several compounds have been established which seem to be commonalities among odor-sufferers. I believe this test has been best designed to suit those who have tested negative for TMAU, yet still suffer body odors.
If you feel you fit into that category and wish to pursue this, please contact jason@meboresearch.org so can continue to build a list of new possible participants.


I spoke with Dr. Irene Gabashvili, one of MEBO’s Scientific Directors, and Irene has offered her custom program, Aurametrix, to Breath Testers of the Menssana Alveolar Breath Exploratory Study, who will be able to enter their “Aura” for 5 days, and Irene will review results of computational analysis and breath testing, and give an assessment/interpretation of your health profile. I want to thank Irene for her generous offer to do this.
MEBO's Managing Director
See update post for more details.


This is a one-year exploratory study of sufferers of difficult-to-control body and breath odor. You will receive a report similar to the those of the three volunteers have authorized linked below, and after the one year study is concluded, Dr. Michael Phillips of Menssana Research, Inc., will interpret the data and give us his conclusion. In order to identify the metabolic pathway that corresponds with the most common odorous chemical found in sufferers, he will categorize and document the various types of body odor conditions based on the odorous chemicals to then study the metabolic pathways that produce the volatile to define its metabolic origins (precursor). This Alveolar Breath Exploratory Research Study was launched by MEBO Research in April 2012 with Menssana Research Inc.

Unfortunately, until we receive a grant, this study has to be sufferer-funded by donations and/or participant volunteers paying for their own test in the study. As participants of this exploratory study, you can take pride in being a pioneer in our community paving the way towards new discoveries that could change the lives of sufferers around the world and their offsprings.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization

3 comments:

baguio said...

Hi all. Is there a confirmed date and venue for UK testing yet?

Just want to make sure I have arrangements in place to schedule it in - and in that way, don't miss it!

Jul 11, 2012, 5:33:00 AM
Maria de la Torre said...

Hi baguio,
The testing in London is planned to take place a day before or the morning of the Thames Festival, which is the weekend of September 8th. I hope to be able to go to London for this event as well as other MEBO Directors. The instrument will not be taken to the meetup itself, but rather tentative plans are to have it in the nearby hotel that Arun normally recommends. More information will be forthcoming soon.

Jul 11, 2012, 8:50:00 AM
baguio said...

Thanks for the update Maria - much appreciated.

Jul 13, 2012, 7:16:00 AM
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