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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 :
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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

Tuesday, December 6, 2016

2nd UCL TMAU group session : official summary

2nd UCL TMAU group session
Summary of TMAU group session given by  psychologist Dr Monique Cloherty

On 22nd October 2016, the London NHS Adult Metabolism Unit (Charles Dent Metabolic Unit, UCL National Hospital for Neurology and Neurosurgery, London) held its second TMAU Group Meeting. This follows similar meetings this year at free healthcare Adult Metabolism Units in Dublin and NHS Birmingham, a breakthrough for the TMAU community.

Perhaps others can see if their regional Adult Metabolic Disorder Units might start TMAU group meetings.

Clinical Psychologist Dr Monique Cloherty hosted the session. The Charles Dent Metabolic Unit has kindly given this summary of the session  with Dr Cloherty for public release. :

Summary of TMAU session given by  psychologist Dr Monique Cloherty
The Charles Dent Metabolic Unit, London
22 Oct 2016

We got to know each other in small groups and shared our
experiences of TMAU.

We shared out stories of isolation. TMAU is very much a social
problem. A secret that we are constantly trying to hide. We told of
difficult events; name calling, bullying and not being believed that
have happened. People rarely spoke about a single event but a
sequence of events linked through time. We shared how TMAU made
us feel about ourselves, we can feel alone at times and paranoid.

We also heard about initiatives and steps that people have taken to
address the problems that TMAU can cause. We identified resources
and skills that made it possible:

Use of knowledge and being fearless
Planning ahead
Having a supportive friend and family
Not putting up with it. Knowing which battles to fight, which
comments to let go.

Key messages to remember from the session were:

We are sharing this experience
Its been a relief to share it
We are not the only ones
We want to live a normal life
We are not going to be defeated
We want to be ‘in’ it.

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Anonymous said...

I know this question is geting bit boring now but I really would like to know if the uk researchers managed to get hold of the grants that they need yet or if there's anything us sufferers can do to speed things along?

Dec 18, 2016, 5:40:00 PM
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