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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

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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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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 TMAU

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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

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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