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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
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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 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

Friday, February 24, 2017

Adult TMAU Referrals : Evelina Hospital London

Adult TMAU referrals.
Adult Metabolism Unit.
Evelina Children's Hospital, inside St Thomas Hospital.
Accept GP and local consultant referrals.
Similar service to Charles Dent London service.
Referrals : England (current info).
Added to MEBO Map (see sidebar).
Email :
Website : Evelina Adult TMAU refer

Mebo has become aware that another ADULT METABOLISM UNIT in LONDON has said it accepts ADULT referrals for TMAU. This would be similar to the Charles Dent Unit run by Dr Lachmann in North London.

How to get referred : 
You would need a GP or Local Consultant referral. There is a chance it may be for South London only (to be confirmed).
Full details can be seen on their website.
The current email on their website does not work (Feb 2017).

Contact details :
Adult Metabolism Unit
referral details :

Dr Yusof Rahman/Dr Radha Ramachandram, Consultants in Inherited Metabolic Disease
Department of Inherited Metabolic Disease
Evelina London Children's Hospital
3rd Floor, Becket House
Lambeth Palace Road
London SE1 7EU

The adult metabolic public e-mail address for GP referrals is:

phone :
020 7188 4004

Adult TMAU referrals : Evelina Hospital London

Why go to an Adult Metabolism Unit ?
They have likely heard of TMAU and know the basics of TMAU.
Will likely order urine test easily. Then DNA test if positive for urine test.
Some sympathy.
They may have TMAU group sessions (a new trend).
Diet advice from the Diet Team.
Official diagnosis etc.

Adult Metabolism Units :
These seem to be a new trend in the UK, perhaps due to the single structure of the UK Health Service (NHS, top-down orders). At the moment it is likely the TMAU person will know everything told already, but the service for TMAU is in it's early years.
In other countries, perhaps you can look around to see if there are Adult Metabolism Units in your region.  

NHS Law/Contract circa 2014
Perhaps this NHS contract/law paper from circa 2013 has helped with the new clarity of Adult Inherited Disorder units purpose in the UK. Trimethylaminuria is included in the list.
NHS : E06 : Metabolic disorders : Scope

The MEBO Map (in the sidebar) is intended as a map of TMAU 'places', mainly places of help. Most of the locations are UK. The Heidelberg TMAU test is thought to be quite accurate. Also Denver TMAU test.
Better/new information for the map is always welcome.

Correction to this post are welcome.
If anyone has been to Evelina for TMAU, you can comment about it if you want.

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