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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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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

Monday, August 5, 2013

A message from Karen regarding Trinzyme

The following is a message from MEBO Research helper Karen James about the Trinzyme research project and fundraising :

Thank you to those people who came forwards to present fundraising ideas for the MEBO for Trinzyme Research Project which will hopefully culminate in the development of an effective therapeutic for TMAU. The £358K Medical Research Council grant will cover the initial stages of research, but we anticipate that research will need to be much more extensive than the grant allows. The scientists involved (including UCL’s Dr.Liz Shephard) want to avoid sponsorship by profit-oriented pharmaceutical companies so that we can keep the cost of the therapeutic low enough for odour sufferers. Therefore, the more money we donate now, the more likely it is that the eventual therapeutic will be marketed at an affordable price.

This truly unique study may just lead to a TREATMENT for various malodor conditions, not just diagnosis, theory, or fact-finding! That is what makes this endeavor so special -- and why it has become an intense 'MEBO Focus.'


We now have some interesting ideas to work on. However, discussions with other sufferers have highlighted the odour sufferer’s overwhelming concern for his/her anonymity/invisibility/non-traceability. If we were raising money for cancer research, everybody would wear a T-shirt proudly stating that fact and then take part in a sponsored event such as a bike ride or run, or even try crowd-funding. Unfortunately, the social stigma attached to our conditions means that people are unwilling to raise funds publicly, and some may even be reluctant to donate via Paypal for fear of being associated with ‘the odour cause’ (we’ve seen similar problems when people have been asked to sign a petition).

Although this is a frustrating situation, we are looking for ways to overcome it. Most importantly, we need to be sure that any fundraising project we undertake will generate an adequate amount of money to balance the time and effort put into it; obviously all of us are volunteers and have to prioritise work and family commitments. So, though some of our ideas are promising and fun and can increase our community’s cohesion (online magazine, E-bay page, fundraising club night, online auction, raffle), they may not be immediately lucrative. Realistically, what we need RIGHT NOW is to raise at least £1000 before Christmas 2013 to show the UK’s Medical Research Council that we are a united, proactive community committed to finding a cure. This responsibility should not fall to a minority: every odour sufferer has the power to generate enthusiasm for the fundraising project by ‘spreading the word’ in a positive fashion. You may not be able to donate personally (financial hardship comes hand in hand with the under-employment of our community), but you can inform others about the project and incite them to support it. Any one of us could ask our relations to donate to the project in place of giving us a birthday or Christmas gift, for example, and any one of us could send this link to friends and fellow sufferers:

A EURORDIS and NORD Member Organization


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