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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

Scroll down and select country

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

Popular Posts (last 30 days)

Upcoming get-togethers

Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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

Thursday, August 9, 2012

Series of FMO3/TMAU webinars from researchers and experts

Click for TMAU webinar news
Series of webinars featuring experts and researchers who have an interest in FMO3 enzyme and/or Trimethylaminuria

To be hosted by Rob Pleticha, Online communities manager of Rare Connect

In co-ordination with members of the TMAU/metabolic malodor community

Hotsing platform is Adobe Connect, provided by Rare Connect (flashplayer needed to view)

Webinar series is currently planned to be held on Sundays around 6pm UK time. All are welcome.

Unfortunately only an audience of 50 can attend.

First Webinar : 19th August : The People's Webinar
2 speakers from the community and Rob will talk. The webinar will be used to try out the technology. The webinar will be recorded for public viewing afterwards.

For full details see the TMAU page on the Rare Connect website
Rare Connect TMAU/FMO3 webinars

Rare Connect adobe connect room for TMAU/FMO3 webinars

pre-questions for the 19 Aug webinar : Post on the Rare Connect TMAU forum

Invitation text

A Rare Connect and TMAU community joint initiative

RareConnect and members of the TMAU community are pleased to announce a series of webinars from experts/researchers of Trimethylaminuria (TMAU) and the Flavin-containing mono-oxygenase 3 enzyme, to be hosted on Sundays, beginning on Sunday August 19th at 6pm GMT (UK time),  with a presentation from members of the TMAU community and Rob Pleticha, Online Communities Manager at EURORDIS presenting the TMAU Community.

The webinars will be recorded and archived for viewing at anytime.

Details for the first webinar are below :

Sunday, August 19th 6pm GMT
The ‘People’s webinar’  
The first webinar will have guest speakers from members of the TMAU community, along with Rob from EURORDIS who is hosting the webinar.
Each guest will speak for about 10-15 mins then will be open to questions from the viewers. The guests for this first webinar are :

Robert Pleticha : Online Communities Manager at EURORDIS describes the International TMAU Community on RareConnect

Karen : Popular community member and UK campaigner on metabolic malodors will provide a talk : “Is it possible to use the media effectively in odour sufferers' struggle for human rights”

Cheryl Fields : Long-time friend and helper of the TMAU community. Will provide a talk : “Having The Power To Endure:  Obtaining & Retaining Employment With TMAU"

Notes about the webinars :
The platform for the webinars is Adobe Connect. This means you need flashplayer installed, which is very likely already done if you can view YouTube videos. All slides will be viewable in the webinar meeting room and all audio will be from the computer. Meaning you need speakers or headphones working properly to hear the presenters. If you would like to ask a question or make a comment, you may do so by your computer’s microphone or through a text chat box.

To test your computers settings before the webinar, visit:

Note : The capacity of the webinar system is limited to
50 attendees. Please enter the webinar room early to ensure your space.

About RareConnect :
A partnership project of EURORDIS and NORD, RareConnect provides a platform for rare disease patient organisations to develop online communities across continents and languages. RareConnect provides a place where patients and families, researchers, physicians, and representatives from patient organisations, can connect in a neutral, non-commercial space.  Translation of stories, blog, and forum posts are completed by human translators.  Patients can therefore have conversations with others in languages they do not even speak themselves. See a video of living with TMAU, subtitled into 5 languages here.

The TMAU Community was launched in partnership with MEBO Research in May 2012. Please register and share your experience there today.
Rare Connect adobe connect room for TMAU/FMO3 webinars


Anonymous said...

Where can we submit questions in advance ?

Aug 10, 2012, 12:37:00 PM
blogcontributor2 said...

Hi. We will make a thread in the rareconnect TMAU forum where people can post questions. At the moment the post function is not working. Of course due to time limits etc we may not be able to go through some/all pre-questions

Aug 11, 2012, 9:21:00 AM
blogcontributor2 said...
This comment has been removed by the author.
Aug 13, 2012, 11:30:00 AM
blogcontributor2 said...
This comment has been removed by the author.
Aug 13, 2012, 11:31:00 AM
blogcontributor2 said...
This comment has been removed by the author.
Aug 13, 2012, 11:33:00 AM
blogcontributor2 said...

you can post questions here :
rare connect TMAU thread for 19 AUG webinar

Aug 13, 2012, 11:34:00 AM
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