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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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at UK Findacure conf 2020

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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
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NORD Member Organization
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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

Wednesday, July 14, 2021

UK TMAU Test Stats 2017-2021 : Activist uses FOI act

A TMAU Activist used the UK Freedom of Information Act to ask Sheffield Children's Hospital the number of TMAU tests done using the new method, and how many were positive.

It took months for SCH to reply but finally they did.

The results are  (using the new TMAU test method)
Feb 2017 : May 2021
samples tested : 1757
tested positive : 212 (12%)

That would suggest say 440 tests a year, with 50 positives.

Nigel's old TMAU Test method 2010 gave results (roughly) :
samples : 600
positive : 200 (33%) 

SCH say the new method is superior and the old method may have been subject to contamination.
Some community members feel Nigel's test gave a better reflection of the community, and so was the better test. Maybe if it was contaminated, it was GOOD contamination !! (i.e. spotting FMO3 cases better).  

Nigel's test had many tmau2 cases (majority), whereas the new test has 0.
This 0 is in line with the few other international TMAU test labs who also have 0 tmau2 cases.
The fact there are no tmau2 cases ever seems unrealistic, making Nigel's old test seem the more realistic test.
Even the old MEBO TMAU test (no longer available) had tmau2s.

Despite the new SCH being as 'strict' as the other few test labs, there are still positives.
212 is 12%. 
A theory is the new method no longer spots tmau2s or 'milds', and so maybe the positives are on the more severe side. The theory is the TMAU test labs only spot severe cases now (and misses the majority, the milds and tmau2s).

At least with positives still being spotted, it seems likely the test will continue to be available despite now being a legacy test in the lab, and probably a bit of a nuisance to them. Certainly the least important test.

NHS Best Policy suggestion : Publish rare disorder test results every 6 months.

UK TMAU test results : 1998 - 2009

UK TMAU test results 1998 - 2011 


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Anonymous said...

I had my test done through Nigel Manning back in 2008, before submitting a urine test he advised me to do a choline load the night before. The test came back positive for TMAU2, back in 2000 (unbeknown to me) I had had my urine tested for TMAU but it came back negative, no mention of a choline load on that occasion.

The body can vary in how much trimethylamine is stored, so a choline load is advised to determine if the body can metabolise it, thus giving far more accurate results. When I attended the event at the Mark Holland unit in Stockport a couple of years ago, they didn’t advise us to load up on high choline foods, so with TMAU2 a lot of the tests done could come back as a false negative.

Jul 16, 2021, 9:58:00 AM
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