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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)

Friday, February 5, 2010

TMAU day : 28th February

Rare Disease Day US: Alone we are Rare.
Together we are Strong

The RRR campaign managers are joining NORD and celebrating the International Day for Rare Diseases on Sunday, February 28, 2010. We are also declaring Sunday February 28, 2010 as the first ever:
International Trimethylaminuria (TMAU) Awareness Day and International medical malodors Awareness Day.

We are joined by the TMAU community and our supporters:
MEBO Research
The Trimethylaminuria Foundation
The NY/NJ/CT TMAU support Group
The Trimethylaminuria Yahoo support group

If you have TMAU, suspect you do or are a supporter of someone who does, join us in raising awareness and funds for meaningful research proposals through our established TMAU Research Fund at NORD. As a community, as of January 14th we have raised $9585.00. We set out on October 1, 2009 to reach a goal of $30,000 in 1 year to jump start some meaningful TMAU research work and we are proud to say that we are on our way there.

February 28th is a great day to push forward. To participate on this day, please make any donation amount you or your supporters can give. (Even if it is a dollar!) It will be exciting to see how many people we can get involved in this process!

NORD will give us the total of all donations made online that day as well as checks mailed in the week prior and following. More exciting, NORD will give us the total amount of people that donate that day! As the NORD slogan states, “Alone we are Rare. Together we are strong.” ITD will be a day in which we can all reflect on the struggles and the victories that we, both individually and as a community face. Let this year serve as the benchmark so that in future years we can have a point of reference of how far we have come. How many people can we ask to support us in our effort to get research started for TMAU!

To Donate online:
•Go to
•Click on Donate Now
•Enter donation amount or choose other amount
•Under “In Honor of,” please type the following for rare Disorders”
TMAU Restricted Research Fund
•Click on View cart, Checkout. Then proceed to checkout.
•Please type on your address and billing info and click “Checkout”
•NORD will mail you a letter confirming your donation to the TMAU Research Fund which can be used for tax deduction purposes in the U.S.

Mail to:
•Write a check with your chosen amount to “National Organization for rare Disorders”
• Under memo write “TMAU Restricted Research Fund.”
• Mail check to NORD 55 Kenosia Avenue PO BOX 1968 Danbury, CT 06813-1968

For more info. Please go to


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