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

Additional info:
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
MEBO Research is a
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

Wednesday, April 10, 2019

UK activist uses FOI to get Sheffield TMAU Test Info

A leading UK TMAU Activist requested a Freedom of Information reply from Sheffield Children's Hospital about their TMAU testing.

Below is the reply ...

I refer to your Freedom of Information request received 22 March 2019.

Please note we can only respond on behalf of the Clinical Chemistry diagnostic laboratory at Sheffield Children's Hospital and not on the behalf of the whole of the NHS.

In 2014 Nigel Manning, who set up the TMAU (trimethylaminuria) service in Sheffield, retired from the NHS and several new members of staff were assigned to different roles to collectively ensure continuity of the TMAU service. Due to age the equipment used for TMAU measurement had begun to be unreliable which was impacting turnaround times for the service. The decision was made to reinvest in the service and to purchase new equipment. Since we had to re-validate the method on the new equipment the decision was made at this time to also update the method to make it more robust, reduce the possible impact of any interferences, and to ensure that it conformed to new rules about the validation of analytical methods as defined by UKAS (UK accreditation service). The new method came in to service in 2017 and has been inspected and accredited by UKAS under the rules for diagnostic laboratories. We have also begun a sample exchange programme with four other international laboratories where we take it in turns to circulate samples which we all analyse and then compare results. So far there has been good agreement between labs, in particular agreeing on whether results are normal or indicative of trimethylaminuria.

Please note, not all causes of malodour can been ruled out by this test. Malodour can be caused by other volatiles which are not picked up by this test. As an inherited metabolic disease laboratory in a paediatric hospital our primary remit is to diagnose patients with inherited metabolic disease, which includes primary TMAU caused by FMO3 deficiency, but individuals with secondary TMAU will also identified if levels are high at the time of testing. We always recommend that analysis of the FMO3 gene is carried out during investigations to confirm a primary diagnosis.

The following presentation was given to patients and representatives of the TMAU community in 2018 and may provide further useful information: - Trimethylamine presentation March 2018

The number of requests since the new method (February 2017) is: 1090

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