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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 :
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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

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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

Saturday, September 6, 2008

Update 4 on UK do-it-yourself TMAU urine testing

Thanks to someone on the MSN Body Odor forum who is being the respected pioneer in this option, it seems that Sheffield Childrens NHS Trust is the tester of the TMAU urine sample via Medichecks. They do most of the TMAU urine testing in the UK.

We still don't know why they are sending sample kits and instructions that seem to differ from what they send NHS/private patients however, but progress is being made.

Their normal instructions are along the lines of:
The type of urine sample we would require is known as a 24 hour urine collection * during this period urine is collected into a 2.5 litre container with approximately 10cc of '5M' Hydrochloric acid to acidify the sample and stabilise the trimethylamine. (This is the same sample collection as for a urine Calcium test).
Your doctor should then send us a 20cc portion of this sample for us to measure:
1 Trimethylamine
2 Trimethylamine-oxide.
(The urine can be sent by 1st class post at room temperature).
They also have instructions in their entry on the site.

The procedures, (and even interpretation of results) vary throughout the world, depending on the lab testing or how closely associated each lab is with others. The main problem probably being it's thought to be a rare and an unimportant problem, and so a few can set their own rules independently. We hope to get a list of test labs along with procedures and testing parameters here.

So for the DIY route in the UK, the only current known routes are:

Medichecks (£285) >>>>> TDL >>>>> Sheffield
other possible other no-hassle route (to be confirmed): Emed(£35)>>>>TDL (£160)>>>>Sheffield or you could ask a Dr to let you test via Sheffield. Either you pay (around £124) or the Dr pays.

The Sheffield Hospital is also known to do the Dimethylglycinuria urine test, which conventional medicine accepts as a bloodborne body odor condition (see this paper). Personally I am not sure why they don't test bloodborne body odor/halitosis complainants for all odorous volatile organic compounds, as was done recently by the Monell Chemical Senses Center to establish the odorous VOC profile (skin) of a normal person

Links in this post:
Sheffield Childrens NHS Trust
MSN Body Odor forum


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