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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

Friday, June 15, 2018

To qualify as participant MEBO/uBiome Study


Click on icon
The Principal Investigator of the uBiome grant-funded MEBO research study, "Dynamics of the Gut Microbiota in Idiopathic Malodor Production", Irene Gabashvili, PhD., MEBO Scientific Director, has written a post about the study in her company's blog, AURAMETRIX. This post includes MEBO/PATM Life Quality Test, "MEBO means metabolic body odor and it includes systemic body odor, bad breath and episodes of malodor NOT related to hygiene or flatulence. PATM denotes "People Allergic To Me" condition. The survey asks about symptoms In the past 24 hours or past few days, up to a week before taking this test."

We are starting pre-screening our candidates to find qualified participants, based on prior test results and ability to accurately report information.

Participants will be asked to submit their samples to uBiome on as different days in terms of their well-being/mood/symptoms as possible. MEBO is a condition of ups and downs. One day you may be completely odor-free, the next day you may have severe odor episodes - called flares. Our participants will be asked to submit their first sample if they felt they experienced symptoms, or had a day or two different from average. Study participants will be asked to submit responses to our questionnaire about those days.
We will privately follow up with suggestions to improve their wellbeing.

Our new Life-quality Test questionnaire will provide a measure for severity of Metabolic Breath and Body Odor and PATM symptoms.

Anyone who may possibly be interested in participating in this study can get a better idea of what it entails and is welcome to take the first version of this Life Quality Test.

María

María de la Torre
Founder and Executive Director

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

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