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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

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UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :

current participants : 113 (update 18dec20)

Saturday, July 5, 2008

2002 Bibliography prepared for the 2nd TMAU workshop : 1% may be affected ?

This 163 citations bibliography (January 1999 through August 2001) was prepared in support of the Second Workshop on Trimethylaminuria* held at the National Institutes of Health (NIH) on March 15-16, 2002, in Bethesda, Maryland

Full article :

PDF format :

Of particular interest is the introduction, where they elaborate on the general assumptions on TMAU from a genetic viewpoint at the time.

These include :

Many researchers believe that there are several types of TMAU caused by a "spectrum" of changes in the gene which controls the formation of the flavin-containing monooxygenase 3 (FMO3) enzyme. In humans, this is an important liver enzyme that controls the metabolism of substances such as TMA. The most severe form of TMAU appears to be caused by mutations in the FMO3 gene; these mutations appear inherited in an autosomal recessive fashion. Studies are leading many researchers to conclude that the less severe forms of TMAU are caused by several non-benign genetic polymorphisms in the FMO3 gene. Genetic polymorphisms are changes in the gene structure that may be fairly common in the population; however, for reasons, which are not well understood, these changes lead to TMAU-symptoms in certain individuals.

It is estimated that as much as one percent of the U.S. population may suffer from TMAU, but its true incidence is not yet known. But whether it is one or one-tenth of one percent, we know that the condition affects people of both sexes and of all ages and races from around the world. Currently there are more than 300 people with a malodor disorder on the Trimethylaminuria Support Group's mailing list, with many more preferring to remain anonymous because of the often-associated stigma, negative and harassing behaviors targeted at some, and the general lack of medical and other support.


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