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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

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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

Monday, December 28, 2009

2009 : reflecting on another year of international body odor and halitosis

Another year draws to an end, and so a look back at the year in terms of body odor and halitosis seems appropriate. On the minus side, perhaps the 'big breakthrough' in terms of body odor research or awareness did not happen, but nonetheless small and significant 'baby steps' were made. This is a quick summary of the year in terms of body odor and halitosis :

This blog and MeBO Research:
The blog reached it's first anniversary in July, and now has been here for the community for 18 months. Aiming to be a platform on the internet so that anyone can find it, whether sufferers or researchers. It included interviews with Nigel Manning (UK TMAU tester), Mark Howard (Biolab), and Cass Nelson Dooley (Metametrix).

Founding of MeBO Research : MeBO Research also came into being as a company in February, with the aim of becoming a charity that stimulates or promotes research into systemic body odors and halitosis, as well as raising awareness of these problems. Research/patient advocacy/campaigner rolled into one. The website started in July and already is having some impact. With the help of Biolab Medical Unit in London, a small study got underway testing 4 areas of gut dysbiosis in body odor and halitosis sufferers who were willing to pay their own costs. Currently 4 results have been received, with 1 more due in the next week or two. Another 2 are interested in testing. The study has a provisional target of 20 testers and then will move on to another area of testing, such as the detox system or metabolism etc.

Community progress :
Bodyodorsupport.com : The closing of the old MSN forum which had served as an accidental online home for those with body odor since the start of the internet would have normally created a vacuum in the group. However thanks to Arun and a number of other helpers, the body odor community got it's own permanent 'home' on the internet in the form of the privately owned Bodyodorsupport.com forum in January. Already there are over 1,500 members.

Australia Treimthylaminuria Foundation & TMAUcure forum: The Australian Trimethylaminuria Foundation, founded by Rob Brown, came to fruition and began it's Yahoo TMAu forum. The ATF is closely associated with Dr Christodoulou's TMAU research proposal, however funding is still to be found. They also started a TMAU store where people can buy all sorts of things and the ATF will get a small % of the sales.

TMAU.org.uk: 2009 also saw the beginning of odor websites elswhere on the net. A mention goes to bigverns TMAU.org.co.uk website and forum, which provides a resource for British TMAU sufferers. The website had a number of scoops including an interview with Dr Robin Lachmann, and was contacted by media outlets.

Meetups : The annual September and Christmas London body odor and halitosis Meetups, with around 20 attending the Thames Festival meetup this year. There was also a meetup in Chicago and Los Angeles.

rrr-tmau.org : Cheryl Marshall appeared on an episode of Mystery Diagnosis in March, about her TMAU story. Cheryl, along with a few sufferers, then arranged a website to help raise funds for the NORD TMAU Fund, with a few people pledging to donate $1K over the year.

Official Research :
Sadly there didn't seem to be any official research this year, demonstrating to the community how they are on their own and need to make change happen. There was a proposal by Dr John Christodoulou and the ATF in Australia, but funds still need to be found for this. MeBO did start it's small study into various areas of gut dysbiosis, and hopes to investigate other areas in the future, such as detox enyzme function and other markers.

Overall it was not a big year for progress in body odor and halitosis research and awareness, but steps were made and the community is learning how to empower themselves especially through the potential of the internet.

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