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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


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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

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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
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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

Thursday, August 7, 2008

Arun's overview on body odor and halitosis

Arun's new forum:



Thanks to Pharmacist and sufferer, Arun Nagrath, [the owner of the new Body Odor Support Forum since January 2009] for posting this on the http://groups.msn.com/bodyodorsupport/managementinformation.msnw for us all. Arun is well-known in the online halitosis/body odor community and has arranged many UK meetups and been involved in other innovative projects on the health issue. He helps manage the MSN body odor forum.

From his excellent introduction article on MSN body odor support, here is a quote as to his opinion on why many don't seem to be able to currently solve their problem.


…it does appear that many of us on these sites appear to have some hitherto unresearched disorders related to their metabolism. Having done some research myself in the past, I believe these are in fact enzyme disorders (yes, more than one!) which bear some similarities to Trimethylaminuria (Fish Odour Syndrome) in that they are systemic but they have yet to be documented. This means that they do not have a name yet!!

Believe me, this lack of research is not particularly surprising since these are rare enzyme disorders (and let me assure you that it is very difficult to research rare enzyme disorders which do not cause serious illness but only result in odour). Breath odour and body odour are pretty common conditions however there are some types of odour conditions which are pretty rare. For instance, faecal breath and body odour that can fill an entire room in a few minutes is likely to only occur in perhaps 1 in 10,000-50,000 people.

Unfortunately, these types of rare strong odour conditions are difficult to treat but some people have had some success by following unusual diets e.g. vegan diet, low choline diet etc combined with excluding indole-producing vegetables from the diet. They have combined such diets with the use of supplements such as probiotics, chlorophyll, and used low PH body washes etc. It is my belief that for the systemic variety (means passed round the body via the blood) of breath/ body odour, if you do not get the diet right then no amount of supplement or body wash will help since you are still getting high levels of smell-forming metabolites being produced from the diet...

http://groups.msn.com/bodyodorsupport/managementinformation.msnw

Please participate in Arun's survey questionnaire at http://www.tmau.shareaflat.net/ Survey now closed

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