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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, July 21, 2011

Lady on UK mid-morning TV show talking about her TMAU (Trimethylaminuria)

Thank you Karen for bravely raising awareness so articulately on a high-profile TV show. Our community is the benefactor. In the 8 minute interview, Karen manages to explain that 'fish odor syndrome' does not cover the range of smells people can have. She also mentions the MEBO Research petition, which is part of the campaign by our international patient advocacy group to raise awareness, reach out to sufferers in the community to provide support, and to initiate research.



For the last 10 years, 44-year-old Karen James has suffered from Trimethylaminuria (TMAU) otherwise known as fish-odour syndrome.

Her breath constantly smells of rotten eggs and the problem also affects her sweat under times of stress. Unfortunately there is no cure.

Karen’s symptoms started showing following some travel injections and a recurrent throat infection but she was told by doctors to just live with it. It was only through her own research that she find out about TMAU.

Karen, who joins us today alongside Dr Dawn, describes her condition as an unrecognised disability and finds it difficult to lead a normal life.

Trimethylaminuria UK Support Website


www.tmau.org.uk
Bringing together people who have Trimethylaminuria (TMAU) , their families, friends and healthcare professionals in a positive, caring and supportive environment.
itv, this morning

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A EURORDIS and NORD Member Organization 

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