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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
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BO Sufferers Podcasts

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Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
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rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Friday, December 12, 2008

Diagnostic Methods for TMAU used in Laboratoire de RMN, Hôpital Saint-Louis, Paris

In this article (2002), Dr. Michel Eugène describes the diagnosis criteria for TMAU and for the differential diagnosis from dimethylglycinuria used in Laboratoire de RMN - Exploration fonctionnelle, Hôpital Saint-Louis, Paris. Dr. Eugène states that, "The prevalence is estimated to be approximately 1 %, but is difficult to evaluate due to poor clinical awareness of the disorder."

Whenever it is available, a proton NMR spectroscopy is used in this lab, as it is the preferential method of diagnosis because it enables simultaneous measurement of urinary TMAO and TMA, and the determination of the ration TMAO / ( TMAO+TMA). It is a "...fast method which does not require any sample preparation, and enables the detection of any molecules whose concentration is higher that 10 μmolar."

The ration TMAO / (TMAO+TMA) is 96± 2% in unaffected patients following a normal diet. A drastic decrease in this ratio is observed in patients homozygote for trimethylaminuria. But an oral load of 600 mg of TMA is required to distinguish between rations of unaffected patients (95±2%) and heterozygote patients (76±3%).
This 2002 trimethylaminuria paper by Dr Michael Eugene whilst working in a Paris hospital is of interest because it gives a 'French' view of TMAU testing. Perhaps he is the 'TMAU expert in France' (not that difficult because there are so few doctors worldwide that are interested). He seems to be well read on the TMAU papers, e.g. knowing that it was recorded at the 1st TMAU Workshop that 1% could be affected. It is interesting to note the 'parameters' he has gone for with the testing. For the urine 'challenge', he has gone for 600mg of trimethylamine (TMA). All other well-known testers either go for a 'choline challenge' or a 'diet challenge'. It could be argued that the 600mg TMA test is the best, mainly because, if you have a simple trimethylamine-challenge oxidizing flaw, you can't pass this test. With the choline challenge test, they are relying on gut bacteria to change it to TMA, much like how yeast turns sugar into alcohol. If someone who done the choline challenge test had plenty of TMA-Oxide in their sample, then their FMO3 enzyme got a good workout. If there was little TMA/TMAO, not enough TMA was produced. The 600mg Trimethylamine test was originally suggested in 1989 by Dr Stephen Mitchell, Dr Smith et al of London, to detect 'carriers'. Dr Eugene is using it for all who do the test, and basing their diagnosis on the % levels produced. He also tests for dimethylglycine in the sample.

Points of interest:
His 'normal' level is very high at
96± 2%.
He expects 'carriers' (heterozygotes) to be around the 76%-95% range. In practice, perhaps 'carriers' around 76% can have transient smell issues.
He uses the 600mg trimethylamine challenge for the urine test.
He tests for dimethylglycine in the same test
He prefers using a proton NMR spectroscopy for testing

http://www.orpha.net/data/patho/Pro/en/Trimethylaminuria-FRenPro10358.pdf
http://www.orpha.net/data/patho/GB/uk-FOS.pdf

Paper on 600mg trimethylamine test 1989 : http://www.ncbi.nlm.nih.gov/pubmed/2501587

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