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anti-TMA pill in a year or 2 ? (scroll 12 mins)

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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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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

Thursday, February 2, 2017

Sheffield TMAU urine test : Back within 2 weeks ?

Old Sheff TMAU test 
Sheffield Children's Hospital, UK.
TMAU urine test program (only current UK/Eire test lab).
Testing was suspended last Autumn due to technical issues.
Should be running again within 2 weeks. 

MEBO understands that the Sheffield Children's Hospital TMAU urine test program should be back up and running within 2 weeks (Early Feb 2017). An aim is for next Thursday. Currently they are storing samples and will test them also,

The Sheffield test program was begun by retired Sheffield employee Nigel Manning around 1997. Without him, there probably would not be a UK/Ireland TMAU test lab. TMAU might be viewed the 'poor relation' of metabolic disorders, and from a hospital viewpoint may be naturally viewed as 'back of the queue'.  Recently this has been changing among the British National Health Service (NHS). Possibly due to 2013-14 government paper about the treatment of rare disorders for adults. For instance, recently there has been the introduction of TMAU group meetings at some UK NHS Adult Metabolism Units.

The test program was expected to be back before christmas, It's not known why it has taken longer. Last November there was a community campaign to get the testing restarted, which included contacting politicians. It seems political reps did inquire about it. Possibly this helped a bit.

TMAU urine testing at other UK NHS labs
It was hoped that other UK NHS metabolic labs may add TMAU urine test to their list of tests, such as Bristol and Newcastle. At the moment there is no news on this, which is a pity. This would mean the lack of a national test couldn't happen again, and may also drive innovation and perhaps even price. For example, there was talk of the new services using Liquid Chromatography, which is the way most Gas Chromotography tests will go if they can. Sheffield has stayed with Gas Chroma testing for now, possibly due to legacy issues. Hopefully the other labs will not cancel plans to start TMAU testing, thinking it is very rare.

More updates will follow. It is likely anyone who joined the email notification option on the SCH website. We will of course notify you here.

Thoughts on the Sheffield TMAU urine test :
1. It could be debated the 'TMAU1' part of the test was too conservative, the 'positive' cut off point working out at around 79% TMAO conversion. Some papers suggest this should be around 90%.

2. It's still a 'closed shop'. with access very difficult to get. The test was last known to be around £137 real price. Most people tend to want to self-pay at test direct. But like most countries, in the UK one needs a 'broker' (e.g. GP). The idea is that people will get the test free through a GP, but GP's don't want to test.
That all being said, we are grateful the UK will have a TMAU urine test lab again.

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