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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

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to join : go to
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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
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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

Wednesday, May 11, 2011

UK : 2 journalists looking for TMAU volunteers for media stories

UK: looking for an 18-40 year old TMAU female who has not appeared in a TMAU media story before
The concept of systemic body odor has almost no awareness in society, including in the medical community. The only systemic body odor with a 'foot in the door' is trimethylaminuira (TMAU). Systemic body odors and halitosis are of course still a major 'unknown' taboo in society. So, anyone who volunteers to raise awareness through the media can safely regard themselves as a hero.

In the UK a the moment, 2 journalists are looking for TMAU volunteers to do articles on. At this stage, it is not known what medium the stories will appear on.

Natalie Lisbona at centralfeatures.com is looking for an 18-40 year old TMAU female who has not appeared in a TMAU media story before. If you want to find out further details or apply you can contact her through her website : centralfeatures.com TMAU media story opportunity

Update from Natalie :
Ideally it will be for a magazine and a newspaper but never say never to TV.
If it's a younger woman, in her 20's, it opens up more media potentials for us but obviously it depends on who comes back to you.Yes they will get paid, again depending on the publication and if they appear in more than one then obviously the fee doubles.
I will also put any support group into the article as a way of thanking you for your help, just please let me know the details.
Kindest regards
Natalie

Also, the forum owner of tmau.org has been contacted by a different journalist looking for a TMAU volunteer. Details can be seen on the tmau.org website

Any volunteers should remember they are relying on the journalist as to how the article turns out, and it is a risk. It is not known if a fee is given.

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