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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)

Tuesday, March 29, 2011

MEBO-Eliapharma TMAU Testing Update and next batch of tests

Even as we wait for the results of the 38 specimen of the 1st batch analyzed by Eliapharma, we already have an additional 12 samples for the next batch.
At this time, Eliapharma is writing the reports of the first 38 samples received for TMAU Testing for Primary TMAU, Secondary TMAU, or negative results.

Urine Creatinine Test: In addition to TMAU testing, Eliapharma is analyzing each sample to measure urine creatinine concentration levels to act as the reference point for measuring TMA and TMAO. This is something also done by Nigel Manning in the UK, as noted in his paper, TMAU - diagnostic testing at Sheffield Children's Hospital, which Nigel wrote for MEBO's Meetup in Nashville 2010.

A urine creatinine concentration level test can be done on its own or with other tests that determine the relative amounts of other substances being excreted in the urine. High creatinine levels indicate a pure test, whereas low amounts of creatinine in the urine indicate an altered test perhaps by drinking excessive amounts of water or taking medication containing diuretics. This additional measure to test the creatinine concentration in each specimen serves to ensure that the urine samples are of good quality. Normally, this test is done as a screening test to evaluate kidney function, but also to provide information on other chemicals in the urine such as albumin or protein.

Even as we wait for the results of the 38 specimen of the 1st batch analyzed by Eliapharma, we already have an additional 12 samples for the next batch. In addition, so far 5 people have expressed interest in providing a sample during the Washington DC Meetup on the weekend of the 9th and 10th of April, and others might decide to do the test as well once they’re at the meetup. So, by mid April, we should have close to 20 samples, and hopefully complete the 30 required to run the test by early May. As per our agreement with Eliapharma, the lab will analyze approximately 30 samples at a time.

If you would like to test in our MEBO International TMAU Testing Program, please fill the test following, MEBO-Eliapharma TMAU Test Requisition/Survey Form.

We are looking forward to receiving the results of this first batch of 38 samples sometime this week.


María de la Torre
President and Executive Director


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