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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, October 14, 2019

19Oct 11am London : TMAU meeting update by Karen

An update by Karen about the TMAU Meeting in London 19 Oct at 11am.
More details have been given.
All are welcome.
Dr/Prof Elizabeth Shephard and Dr Azara Janmohamed are giving up their Saturday morning to have a meeting with us. We only have 2 hours to demonstrate that our community need help, so it would be good if a large group of us could attend at:

St Mary's Hospital,
SMCA Clinical Lecture Theatre, Level 2, Cambridge Wing,
Praed St, 
Paddington, London W2 1NY

 from 11am to 1pm.

Any odour sufferer is welcome to attend. An email to confirm attendance would be much appreciated:

CONTENT OF MEETING As stated in my original message, one focus of this short meeting will be discussing the need for a more comprehensive, useful test. For this reason, it would be good to have lots of people whose TMAU tests came back negative attend the meeting.

Dr Shephard will also be talking about a potential project. As always, nobody wants to make people hopeful, only to have them let down by a failed bid for funding, but the potential project involves an application for funding with the Halley Stewart Trust for a social project regarding tmau/metabolic body odour.

The aim is to get the backing of this Trust to fund a social research project into the effects of living with TMAU. The Trust will fund a post for a research associate who will, professionally and ethically, conduct interviews (audio, via skype perhaps) with our community and carry out surveys. 20+ face to face interviews and 100+ written surveys are needed.

With this evidence of discrimination in the workplace and social inequality etc, the backing of Halley Stewart Trust, and support from UCL, Liz Shephard hopes to establish an All Party Parliamentary Group which can then effect change at government level regarding disability etc. Her UCL colleagues/advisors have said that our individual efforts to contact MPs will always have minimal impact and that backing from UCL and from a Trust like Halley Stewart will have more impact. Let's hope that once the government realise how much it costs to keep odour sufferers sick (via welfare benefits, counselling etc), they may then decide it's cheaper to cure us!!!

To read the previous update : click here

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