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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 :
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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

MEBO Private Facebook Group
to join : go to
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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)

Friday, November 4, 2016

UK Sheffield TMAU testing SUSPENDED for unknown time

Sheffield Children's Hospital was the only known source of the TMAU urine test in the UK.
This was entirely down to lab clinician Nigel Manning.
The service ran from about 1998 to 2016.
But Mr Manning recently retired, and it seems the TMAU testing has been suspended.
It is not known how long it is suspended, but it could be forever.
This was the only UK source of the test.

Posted today by admin of forum
The admin of the UK TMAU support group posted this message today (Nov 4)

Dr Manning has recently retired – due to problems with the assay they have suspended testing for TMAU for the foreseeable future. This is clearly a huge issue for those wanting to be tested,
Currently Sheffield is (was) the only lab in the UK running this test – the alternatives are labs in the US or Netherlands but I have no idea of prices and whether a GP would fund.
Unfortunately Dr Lachmann will not be able to accept any new referrals at the moment as a result.
New information will be posted as and when I receive it. 4th November 2016

 read the post here    

Unacceptable service for a metabolic disorder
It does not seem right that a country depends on a clinician voluntarily setting up a test for a metabolic disorder and the test being seemingly entirely dependent on that person.

A similar issue arose at the Arkansas USA lab. The Denver hospital 'discovered' TMAU and has a history of testing. A Dr who worked with the lab then moved to AK and started testing there. However the testing there also stopped. It seems we are often dependent on unique individuals rather than a national test strategy.

Campaign to find new UK TMAU test lab (NHS at least, but preferably direct-testing)

Perhaps UK readers may feel like trying to do something about this, such as writing an email to 'decision-makers'. For instance the Health Secretary, MP's, regional Hospital Metabolic Test labs etc.

Example email (can be altered etc)
Here is an example email :


re testing for the metabolic disorder TRIMETHYLAMINURIA (TMAU) in the UK.
No UK/NHS lab now offers the test.

Until recently, Sheffield Children's Hospital was the only UK source of the TMAU URINE TEST in the UK. This service seemed to be entirely due to one person (a lab member), who both voluntarily started the service (around 1998) and recently retired.

Now it seems the TMAU test service is to be suspended for an unknown time.

One way of looking at this is that it is unacceptable for a country not to have a 'fixed' test source for a metabolic disorder test. Even better would be if relevant labs were told to offer the test from their own lab and not source it from one national lab.

NHS test service
It would seem sensible for the NHS to offer this test with a secure source at least.

Last known stats for Sheffield TMAU test service (from graph) :
samples tested :
2009 : about 220
2010 : about 590
2011 : about 580

Link to graphs :

Self-pay direct-test would be ideal option
For the community, ability to direct-test and self-pay would be the ideal option, but I understand our country has a 'cartel-type' system which suits NHS workers best.

GP's reaction to patient asking for test :
Never heard of TMAU.
Resents payment of test (even though patient would rather self-pay).
Refuses to test.
Has no idea what results mean.

I would be grateful if you would look into this and reply.


Possibly helpful images.
Last known Stats for Sheffield TMAU testing : 2011

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