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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

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to join : go to
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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)

Friday, November 22, 2013

TMAU Research Grant posted in RCUK Gateway to Research

The "Therapy for the body and Breath malodour disorder Trimethylaminuria (TMAU)" has been posted by the UK Medical Research Council in the Research Councils Gateway To Research Site. You can also access this award information by going to the RCUK Gateway to Research site, and typing in the award code, MR/K015494/1. Please feel free to read all about it, including the Abstract, Technical Summary, and Planned Impact of this research as registered with the Medical Research Council, UK.

Our scientists do not wish for sufferers to put themselves or their families in a difficult economic situation to donate to this fund.
We have been announcing this grant since December 2012, and have been fundraising to support it with the Trinzyme Project. After discussing our fundraising efforts with our Scientific Advisor and Principal Investigator of this research project, Professor Elizabeth Shephard, I would like to relay what she and another scientist have told me. Our scientists do not wish for sufferers to put themselves or their families in a difficult economic situation to donate to this fund. In regards to this research project, the suffer's needs and well-being come first above all others.

Having said this, it is MEBO's aim to fundraise for large donations, and we hope to launch an aggressive fundraising project in 2014. As we have been saying all along, the more we can delay involving investments from pharmaceuticals, the lower the cost to sufferers this therapeutic will be. If you are interested in being part of this fundraising project, please come with your ideas and volunteer work efforts so that we can organize a strong campaign.

Needless to say, I know our whole international community is elated with excitement over this incredible opportunity to lead normal, healthy lives. It will take a few years for this therapeutic to come to fruition and to become available to sufferers, but it is well without our grasp in the immediate future. Now, all we need to do is to work hard to keep the cost down.


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Option: pay with your credit card instead of PayPal account by clicking on either Donate button above.

María de la Torre
Founder and Executive Director

A Public Charity (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

A EURORDIS and NORD Member Organization 


Maria de la T., Founder and Executive Director, MEBO Research said...

Looking for translators to write this in multiple languages in facebook, the MEBO Spanish and Portuguese Blogs and in RareConnect. Please feel free to translate and post in your respective sites, or to copy and paste into any and all sites. The point is to get this information out to the public. Thanks to everyone for their enthusiasm and support.

Nov 22, 2013, 12:31:00 PM
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