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

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MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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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
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

Tuesday, June 21, 2022

Campaign for choline testing TMAU patients


Choline does not seem to be tested by health services.
Even a private lab is impossible to find.

TMAU cases have a right to choline testing.

Why ?
TMAU people are probably prone to TMA-dysbiosis. TMA destroys diet choline in the gut.
There must be a good chance TMAU people are always choline deficient. 
Choline is important for health, especially the liver (anti-NAFLD ... it's a fat decongester) and brain (it's part of acetyl-choline).
Ironically TMAU patients are told by consultants to go on a low choline diet.

How would the TMAU-prone get choline ?
Currently it would need to be via injection.

Whatever, a test can rule this theory in/out.

Hence the campaign : TMAU people have a right to choline testing.
This should be along with the TMAU urine and DNA test.
(FMO3 gene test is recommended more than the TMAU urine test, but you have a right to both).

TMAU urine test :
Very few labs test, but they seem to use the same method, which results in 0 TMAU2 cases.
A suspicion is the TMAU urine test only spots severe genetic cases. which is maybe like 5% cases.
This would mean 95%  'mild genetic' cases being missed (gene test should spot some, but not all).
Nigels pre-2017 Sheffield test seemed to spot quite a few 'mild TMAU1' cases and had mostly TMAU2 cases. That method was replaced in 2017 by the one used in most other labs, and now there are 0 TMAU2 cases and much reduced TMAU1 cases.

Choline test a better 'FMO3 malodor' test ?
Maybe choline is a better biomarker. 
Maybe not, but maybe.

Could the smells be 'chronic choline deficiency' ?
There's an outside chance. Who knows.
Testing would at least spot a deficiency.

Choline's importance for general health is currently underestimated by society.

So a TMAU patient 1st visit should be along the lines :
FMO3 gene test.
TMAU urine test
Choline blood test

Choline testing should be followed up a few times.

What to do re the campaign ?
Anyone seeing a metabolic consultant, mention choline testing. This is to pressure them long-term. They will probably reject individually, but health professional mindsets are like turning tankers around.
Mention to Dr.
Write to politician.

Dr Steven Zeisel is seen as the 'godfather' of choline understanding in humans.
(probably a bit behind the curve imho)
Here he talks of choline a few years ago.


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