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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

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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)

Monday, February 1, 2010

TMAU genetic testing in Spain

This lab looks for mutations in the FMO3 gene, and if they cannot find any, they proceed to look at other TMAU or other body odor related genes: SLC22A1, DMGDH, SDH, FMO1.We are most grateful to a member of our community, Natalia (Nata_80/Jersey), who has done us the favor of obtaining important genetic TMAU and FMO3 testing in Valencia, Spain, at the Hospital Clínico Universitario de Valencia, Instituto de Investigación Sanitario, Fundación Investigación Clínico de Valencia (INCLIVA) headed by Dr. Javier Chaves. Nata relays the following information:

This clinical hospital in Valencia is doing genetic analysis of this condition [TMAU]. It also accepts and analyzes samples from other countries.

The lab looks for mutations in the FMO3 gene, and if they cannot find any, they proceed to look at other TMAU or body odor related genes: SLC22A1, DMGDH, SDH, FMO1.

These tests require a physician referral (public or private, who would need to assume the cost of these tests)…

Contact information:

Unidad de Genotipado y Diagnóstico Genético
Fundación Investigación Clinico de Valencia-INCLIVA
AVDA Blasco Ibañez 17
Valencia 46010
telefono: 963862664
fax: 963862665

PLEASE NOTE that TMAU urine tests are not done here, although measures to set up this type of test are underway. Normally, in the TMAU diagnostic process, the urine is tested first, and if there is an excess of TMA, the gene test is then performed. I don’t have any knowledge of other labs in Spain that do urine tests. However, there are labs in other European and American countries. Perhaps they will receive samples from other countries.

Additional information provided by Ana Barbara Garcia of the Unidad de Genotipado y Diagnóstico Genético [The Genotyping and Genetic Diagnostics Unit]:

Yes, we perform genetic diagnosis of trimethylaminuria. However,
samples should be sent from a hospital or medical practice.

The procedure of this diagnosis involves 3 steps, although you
may decide to perform all of them or only the first:

1- FMO3 gene analysis: Most mutations responsible for the disease have
been described in this gene. The cost of this analysis is (350€)

2- If no mutations have been found in step 1, we propose to analyse 2
other genes, where some mutations have been found: SLC22A1 (500€) and
DMGDH (600€).

3- If no mutations are found: we propose to analyse 2 genes. They have
a role that make them good targets responsible for the disease:
SDH (750€) and FMO1 (400€)

If you are interested, I would email your medical doctor the instructions and all the documents that should be filled.

Thank you very much for your interest.




Unidad de Genotipado y Diagnóstico Genético
Fundación Investigación Clinico de Valencia-INCLIVA

AVDA Blasco Ibañez 17, Valencia 46010

telefono: 963862664
fax: 963862665

En español


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