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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, July 20, 2010

Hello to 'This Morning' viewers

Update : The video is now on the This Morning website in the link below

Hello and welcome to 'This Morning' viewers searching for information on Trimethylaminuria (TMAU), previously known as 'fish body odor syndrome' As a community, we would like to thank Big Vern from Cumbria as a instrumental role player in helping get the person who appeared on 'This Morning'. He did so via his UK-orientated online TMAU support group tmau.org.uk . Thanks Big Vern for working diligently for our community.



This blog is part of MeBO Research's campaign to raise awareness and instigate research into systemic body odors and systemic-caused halitosis, which could be quite a common form of body odor/halitosis neglected by the medical system. Currently TMAU is the only form recognised by the medical system (if you can find a Dr who has heard of it!), and dimethylglycinuria is mentioned in pubmed as another type of systemic body odor, but only one case has ever been found. It's possible that 'bowel-smell body odor syndrome', which seems the most common type on the forums, has not yet been properly defined, though some feel TMAU can cause bowel smells.

This post is intended to give you a few pointers to the online body odor community and links to the general information currently available on TMAU.

MeBO Research aims to become a pro-active research funder and patient advocacy group about systemic body odors and halitosis. A long-term goal is the founding of an international Body Odor and Halitosis research center and clinic. MeBO is currently filing for charity status in the USA.

Forums:
The person who appeared on 'This Morning' did so via the UK-orientated online TMAU support group tmau.org.uk, run by Big Vern from Cumbria

Bodyodorsupport.com is 'body odor central' online, owned and run by Arun Nagrath, who often organizes UK meetups.

The Yahoo TMAU group has for quite a few years been the natural online group for TMAU discussion in particular.

You can see other body odor/halitosis forums in our list in the sidebar.

TMAU reference links :
Most of the best TMAU reference links we know of are kept on the MeBO Research TMAU page

TMAU Testing :
In the UK, most Drs will not have heard of TMAU, or dismiss it as too rare to be likely. If you want to be tested on the NHS, it's likely you will have to convince your Dr. You could do this by sending them information on TMAU before your appointment, or take info with you. Also, the only clinical TMAU tester in the UK, Nigel Manning, has kindly offered to email your GP to tell him about TMAU. Many people also prefer to get referred to Dr Robin Lachmann in London, who runs an adult metabolism unit. If you cannot get tested on the NHS and would prefer to pay direct, you could try asking for the TMAU test via Emed (£175 ?)) or Mullhaven (£193 ?). More details are available in the MeBO Research TMAU test list.

There is also more info on international TMAU testing in the MeBO Research TMAU Test list

Welcome to the group. You are not alone. Hopefully we can all help each other to get systemic body odor recognised as a problem by the medical system and encourage research that is much needed. Do not be afraid to ask for clarification, help, advice or to express yourself in the various outlets for the body odor community online.

Some youtube videos on TMAU :
Help I smell of Fish part 1
Primetime TMAU
TMAU case on One Show
TMAU case on Embarrassing Bodies

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