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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

Scroll down and select country
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

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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Saturday, August 13, 2011

Volunteer TMAU test data table




MEBO Research public TMAU database
Currently, the community has no access to trimethylaminuria test data, meaning those with the most interest in finding a cure have no information on testing patterns that may help us to better understand the disorder.

Nigel Manning, the Principal Clinical Scientist of Dept. Clinical Chemistry at Sheffield Children's Hospital and the only current trimethylaminuria phenotype tester in the UK did kindly give MEBO Research a PDF document a while ago that contained much appreciated anonymous information on his testing results of up until 2009.




Sheffield TMAU results up to 2009.
Those to the right are genetic TMAU.
Above the line is trimethylamind (TMA) overload.
According to the reference ranges that Sheffield have set
to help understand TMAU better, MEBO Research have started a voluntary anonymous 'TMAU test result database,' which is available for public viewing. So far only a few testers from the Sheffield lab have kindly added their results. If anyone from anywhere wishes to add their results, they are welcome to do so through this form. There is no need to give any more information than you wish to.

This would also help people understand the different reference ranges and protocols of the labs currently testing. For instance, it is our understanding that the Denver lab expects a person to convert 92% of TMA to trimethylamine N-oxide (TMAO), whereas Sheffield only expects around 82% to be converted from TMA to TMAO. Since TMAU is such a 'neglected' problem, so few labs test for it and there is much more yet to be understood.

The database is held in a Google Docs spreadsheet, and the public version will be a PDF document hosted on the MEBO Research website that will be regularly updated.

(PDF document hosted on the MEBO Research website)


Or you can fill the form below :

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