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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

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

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UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

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)

Tuesday, December 27, 2016

UK TMAU testing : Bright 2017

Sheffield Children's Hospital is/was the only source in the UK (and Ireland) for the trimethylaminuria phenotype (urine) test.
Due to a machine fault, it was suspended in autumn 2016.
Now Sheffield and other UK NHS Metabolism labs plan to offer the test.
A MEBO Campaign may have played a part.

Good news (UK)
Our understanding is that not only will the Sheffield lab have the test running again soon (estimate : late January 2017 ... next validation check will be Jan 9th), but possibly due to a campaign by MEBO and the TMAU community, it seems that other UK NHS labs are looking to offer the test. This could lead to new opinions and innovations. It seems likely that new labs may switch to Liquid Chromatography ( as the MEBO test uses), which is seen as a better method than Gas Chromatography, and seen as the future method (for standard 'practical' labs). For now, Sheffield is continuing with it's proven method using Gas.

MEBO Campaign
UK MEBO director Karen James spearheaded a campaign to get the test reinstated as soon as possible. This included contacting (e.g.) politicians (Health ministers, the UK Health Committee). It seems they did contact NHS labs about this. Emails were also sent to REGIONAL UK NHS labs that specialize in metabolism. This may have played a role in other UK labs now looking to offer the test.
Perhaps this can inspire others in other countries.

It seems a private sector company which is probably an offshoot from the NHS, VIAPATH, may also offer the test. It's unlikely this will be direct-to-consumer. More likely they will supply organisations who provide the test to Health Professionals. But perhaps ways can be found around that.
VIAPATH website
The UK NHS metabolism test labs seem to communicate via METBIO, which is a sort of 'union' for them.
METBIO website

Overall, TMAU testing was looking at a crisis in 2016, and now is looking much better. With now more than one lab expected to test in the UK, and possibly innovation and new views on the (conservative) TMAU1 reference range that Sheffield had.

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