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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

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
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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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :

current participants : 113 (update 18dec20)

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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