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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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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

Wednesday, September 19, 2018

TMAU MEBO Director on Dutch TV ... New TMAU Youtube video

MEBO Mental Health Director, Crissan Rosalia, Health psychologist, MSc., appeared on Dutch TV tonight on a program about smells.
Her part was to talk about living with TMAU.
In it she talks of smelling of manure, cigarette smoke, poop, garbage (typical smells the TMAU community identify with).

The full program may be available sometime (includes the story of a lady with anosmia).

The program makers have kindly issued a shorter TMAU video of the program to their youtube channel.

We are grateful to Crissan for being so brave, and the program makers for taking an interest and promoting awareness of TMAU.



Crissan not only very proactively raises awareness about TMAU, but she also dedicates herself to help sufferers cope emotionally with living with this condition. She writes a monthly Mental Health Column in this blog with her professional views on coping and understanding.

Comment from Crissan about the program
Today the NTR ( a Dutch tv channel) is going to post this short mini-report about Trimethylaminuria on their website. They have already posted it on Youtube. Tomorrow the full interview will air on Dutch tv. The producer, Dirk De Bekker, has told me that this episode about "smells", is already getting alot of attention, not only from people in the Netherlands, but worldwide. Hopefully this will help raise more awareness for TMAU.

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A EURORDIS and NORD Member Organization

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