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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect 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

Friday, September 21, 2012

TMAU/FMO3 Webinar this Sunday 2pm EST

Sunday 23rd September at 7pm UK time (2pm EST ... check your timezone)
6pm Greenwich Meantime : Check GMT time here : GMT current time
Trimethylaminuria/FMO3 webinar with guest speakers :
Professor Elizabeth Shephard & Professor Ian Phillips

(veteran researchers of FMO3 enzyme and trimethylaminuria)

authors of :
NIH Gene review entry for TMAU
part-authors of TMAU clinical utility genecard

Slideshow presentation : FMO3 : bugs,genes and drugs

Hosted by : Rob Pleticha of Eurordis and
A joint-initiative between rareconnect and TMAU/FMO3 advocates

To take place in the webinar room (flashplayer needed) : Click here to go to the Eurordis Webinar room

TMAU/FMO3 webinar 23rd Sept : will you attend ?

Everyone Welcome ! To the first of a series of webinars based around trimethylaminuria but moreso based around the enzyme that oxidizes trimethylamine and 1,000's of other malodorous compounds : Flavin containing mono-oxygenase enzyme isoform 3 (FMO3). Over the next few months it is hoped we can get a number of experts/researchers/clinicians of FMO3 to speak in the rareconnect webninar room. We are delighted and honored that our first guest speakers are the veteran FMO3/TMAU researchers and experts from London : Professors Ian Phillips and Elizabeth Shephard. They will provide an in-depth slideshow lecture on FMO3/TMAU and will be available for questions from the audience.

 Who is the webinar for ? 
The webinar is for everyone in the malodor community but particularly those who feel they have a metabolic malodor issue that may possibly be due to overload of FMO3 enzyme. But everyone is welcome to pop in and listen. You can even ask questions if you want (by text or maybe by audio or webcam)

Why only 50 places available in the room ?
It is standard practice to take a license out from Adobe Connect for a number of people per room at anytime. The limit in this room is 50 people at anytime. Hopefully it will not be an issue but if it is then long-term hopefully an answer will be found.

Webinar will be recorded and posted on youtube :
The webinar will be recorded and posted on youtube afterwards so that everyone; sufferers and others interested, can view it afterwards. The first webinar had sufferer Karen as a guest and you can hear her speech here : Karen on TMAU

If privacy is an issue :
If you are concerned about privacy, you can use a username for the room. There is no need to use your real name. Audience members cannot be seen and you do not need a webcam or mic to listen in. Alternatively if you are not concerned about privacy you may be able to ask questions by audio or video as long as the technology holds up (this is our first major webinar so we will be seeing how the room copes with so many visitors).

Check the timezone :
Being fully on the internet, everyone worldwide can join. It is scheduled for 7pm UK time which will also be 6pm Greenwich Mean Time. Look out for any changing local time zones over the weekend etc. Everyone is welcome.

A special thanks to Rob Pleticha at and Eurordis for hosting the event and making it possible, and for long-time friends of the community Professor's Phillips and Shephard for making it possible for us to have guest speakers ! Let's hope this webinar acts as a template to show health-disorder communities how webinars can unite them, help create networks, and further their causes.

About Professor Shephard : Professor of molecular biology. Based in University College, London. Link to university page of Professor Shephard

About Professor Phillips : Professor of molecular biology at Queen Mary University, London Link to university page for Professor Phillips

About Rob Pleticha and

MEBO Research


Anonymous said...

thank to all that participated and set this up . Awesome . Look forward to the next !!

Sep 23, 2012, 6:41:00 PM
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