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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


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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

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
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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

Tuesday, March 20, 2018

Sheffield CH publish a TMAU document

Sheffield Children's Hospital have published a TMAU document on their website.
It's an ABRIDGED version of the powerpoint they presented to the UCL London TMAU community group.
While the document is welcome it's still a long way from what a lone national test lab could offer the public.
The lecture was to explain the differences between the 'old' TMAU test they did up to 2016, and the 'new' method.

Sheffield CH TMAU Powerpoint PDF
Page with document link

Some initial eye-catching about the document.

 Assay running for one year
 n = 725
 Includes repeat samples and monitoring patients,
including those on treatment
 147 results below limit of quantitation
 Very low levels, unable to provide quantitative result
 453 results within ref range for TMA and N-oxidation
 94 results outside ref ranges for TMA and N-oxidation
 8 results outside ref range for TMA, within ref range
for N-oxidation
 23 results within ref range for TMA, outside ref range
for N-oxidation
 Mainly known patients on dietary restriction

The document includes a graph of the 725 results

They say :

 Important to note:
 Results from the ‘old’ method cannot be directly
compared to those using our ‘new’ method
 Results obtained by our method cannot be
interpreted using other laboratories reference ranges
(such as those quoted on scientific papers)

Whether that is subjective cannot be confirmed.

Sample Exchange Program between the 4 main known  TMAU labs :
The 4 best known TMAU test labs seem to test each others samples in a small survey each year, presumably to double check results.
It's not clear what this entails. Probably retesting samples to see if they get same results, even though they all use different methods. 
Perhaps they could add South Africa to their program.

Ref ranges :
These seem to have been taken from a 1997 paper (Maschke et al) and from 37 'control' samples to confirm.
1997 paper
Whether this ref range is conservative or 37 controls is standard is unknown.

So the document is welcome but still more for the public would be welcome.
Such as a TMAU page on the site where the public can get details how to test etc. 
People might think that a good minimum for a national test lab. 

Comments are welcome.

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Deb said...

Hi, do you recommend doing the test at Sheffield? or is it better to wait? Thanks

Mar 21, 2018, 9:32:00 AM
blogcontributor2 said...

well it looks like around 16% got a tmau diagnosis.
I think the old test was more.
I expect most people to be 'normal' though.
So you pays your money ...

Mar 21, 2018, 10:17:00 AM
blogcontributor2 said...

with the old test about 1/3 got a positive

Mar 21, 2018, 11:11:00 AM
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