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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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Blog Archive

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)

Wednesday, June 6, 2012

A Volunteer's Reflection

Hello everyone.

I am not much of a writer, but I want to share with you my first experience with MEBO. I first contacted MEBO two years ago when I was in desperate need of finding out what was going on with my body. I asked myself the question, why after so many years of being okay, does this have to happen. I had many, many questions, and after years of visiting doctors, I was receiving the same response, that I was physically okay. At one point, my doctor said to me, “Since we’ve checked everything physically, let’s also check you mentally”. I actually wanted to breakdown a little, but thanks to the many sufferers who shared their stories, I was prepared. I just wanted a diagnosis. I went along with the doctor’s idea, mainly so I did not have to alienate myself from yet another doctor. I consider myself a very strong person, but I had simply enough. There was only one way for me, to find answers!

I constantly tell myself “I refuse to let my symptoms get the best of me” and I keep on living, hoping that each week that comes by will be the breakthrough week for me to find answers.After reading about TMAU and stumbling upon the MEBO blog, I contacted Maria to find out about TMAU testing. Days seemed to worsen with symptoms, almost like an annoying burden that keeps following me around. I began to feel it getting the best of me. Without anyone to talk to about my symptoms who believed I had a problem, I sent an email to Maria without knowing if she would even respond to me or not. Sure enough, Maria not knowing who I was, emailed me back with some words of advice regarding cognitive behavior. At that moment my initial reaction was “what”? And I’ll be honest, at that moment, it was not what I was looking for. I wanted an answer, a diagnosis, a prescription, the reason why this is happening to my body. But I have come to realize, her advice is exactly what I needed at that moment. It was a reality check that this thing I was facing would be around for a while. And I needed a coping mechanism. I constantly tell myself “I refuse to let my symptoms get the best of me” and I keep on living, hoping that each week that comes by will be the breakthrough week for me to find answers.

When I spoke to Maria sometime last year, we shared almost the same spirit, agreeing not to sit on the side lines, waiting for something to happen, we have to make things happen for ourselves. And this proactive approach, this stand up for yourself approach, is why I love MEBO so much. And this sentiment is also shared by MEBO Directors. I volunteer for MEBO now - realizing there is so much work to be done, and so little help. I applaud Maria’s continuous passion, especially when she tells me, “I get hundreds of emails a week and I try my best to reply back with a personal response, and feel terrible when I can’t respond”. The reason I say friends, is that we are not just a community of strangers - we share common stories and common goals. We feel the same emotions, pain, struggles and social concerns of one another.Since then I have had the great pleasure of working with Maria, and everyone at MEBO, the Scientific Advisers, and all of our FRIENDS in the community. The reason I say friends, is that we are not just a community of strangers - we share common stories and common goals. We feel the same emotions, pain, struggles and social concerns of one another. And let me tell you, it has not been easy. There have been many times of frustrations and many, many bumps in the road. From unfriendly inconsiderate sufferers who want answer now - to very mean and unresponsive scientists. Sorry there is no way to sugar coat it. But I try and maintain my composure.

I am excited to say that MEBO is doing many things this year with many potential studies in the works. We continue to work with many great dedicated scientists such as Dr. Stanley Hazen of the Cleveland Clinic and his laboratory team, Dr. Michael Phillips and the Menssana Laboratory team, Drs. Elizabeth Shepherd and Ian Phillips, Nigel Manning, Principal Clinical Scientist, and all the MEBO Scientific Directors and Advisors. It is a shared goal between MEBO and myself that we continue to ask questions, contact experts, contact media and the press, initiate research, so that we can find answers and get the research we all deserve.

Managing Director
MEBO Research

MEBO Research


Anonymous said...

Thank you!!!!!!!!!! :-)

Apr 7, 2013, 6:14:00 PM
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