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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

Friday, September 5, 2008

Update on UK do-it-yourself trimethylaminuria testing


It turns out that Medichecks is sourcing the test from The Doctors Laboratory (TDL) in London. Ironically TDL may have added the test recently due to an email request. It's unknown what happened to Medichecks original source. Whatever made them raise their quoted price from £199 to £285 is disappointing if not a reasonable action. £285 seems too expensive.

TDL originally quoted the test being available at £160, but they still go by the 'broker' rule (i.e. doctor knows best). There will probably be a way around this. One potential possibility (to be confirmed) is testing through emed. They are a small group of doctors based in a UK hospital who are allowing people online 'help' for £20 a year plus £15 for each 'consultation'(?). If they agree to be the TDL referrer, that would make the price around £195. None of this is recommended since it's unknown if they will agree yet.

The minimum price possible seems to be around £124 (That is what Sheffield Childrens Hospital charge everyone (last years price). If through the NHS, it's up to the Dr to meet the charge if they want)

Also, TDL have been contacted to ask about the testing guidelines, since it seems more than sending out a plastic container seems needed by most labs. TDL have their own labs, but they said they are outsourcing the urine test from a "specialist genetic testing centre"

Any new information or feedback on this is welcome. The aim being to have a UK source for testing without a Dr at the cheapest price. 

As a thought, perhaps another potential scenario someday would be trusted sources being given referral status, perhaps with a (e.g.)$10 contribution added to a BO/Halitosis research/help/awareness fund, as an idea.

In the USA this isn't an issue since the Denver lab (when operating) allows anyone to test freely with no obstacles to overcome. The Arkansas lab also allows people to test but it is unclear if they allow people to test direct. They are the lab who accepts Mayo Clinic samples.


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