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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
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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Blog Archive

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)

Sunday, May 19, 2019

paper : Mild Persistent Isolated Hypermethioninemia

disorder : persistent isolated hypermethioninemia (PIH)
enzyme at fault : Methionine S-adenosyltransferase
most common gene at fault for enzyme : MAT1A

Metabolic Body/Breath Malodors are probably due to weaknesses in an enzyme (or enzyme overload).
So any papers that may be to do with enzyme disorders that may create a smell are of interest.

Currently Health Professionals are only aware of 'smelly' enzyme disorders which are life-threatening or obviously disabling (apart from TMAU).
Usually these people will have very severe mutations and more likely to be 'homozygous' (mutation on both sides of gene).

Hypermethionemia is a very serious disorder, and so is tested for in some national/state NEWBORN SCREENING PROGRAMS.
Because of this, they will also pick up newborn data statistics on e.g. the commonality of carriers etc.

In this paper they have looked at newborn stats for HYPERMETHIONEMIA caused by MAT1A gene.
The full paper is not out, so its unknown how many were tested.

Paper (abstract. Pubmed) :
Mild Persistent Isolated Hypermethioninemia Identified through Newborn Screening in Michigan

Shades of Gray
Metabolic dept Professionals in Health systems tend to think of Metabolic Disorders as YES or NO. You either have (the severe type ... e.g. homozygous for a severe mutation) ... or not.
They don't contemplate the idea that 'carriers', especially COMPOUND carriers (carrying 2 or more different faults for same gene) may have health issues due to the faults.
Rather than being yes or no, these patients will have various SHADES OF GREY of a disorder, perhaps only having a transient smell (e.g. hypermethionemia, isovaleric acidemia).

Metabolic Consultant attitude to patients ..
Patient is comatose, obviously very ill, crippled, green, dying etc : Patient has something wrong.
You walk, talk, look ok .... Patient is normal.

In the case of MILD TRANSIENT METABOLIC BODY/BREATH MALODOR, this means they miss all cases and are unaware of the disorder.

In this case there must be a chance that CARRIERS may have a smell problem to do with this enzymes substrates (chemicals).

They say they picked up 16 cases of 'benign' PIH in this Newborn Screen Program.
"We describe 16 asymptomatic individuals with PIH"

Also of interest they say ...
"There were a disproportionate number of individuals with African descent in this cohort."

This seems to tie in with the MEBO Commnunity, but has also been said in a TMAU Paper by Monell.

It goes to show how even enzyme disorders which are life-threatening, limiting, crippling ... carriers may also have no problem other than a TRANSIENT SMELL, especially if they are COMPOUND carriers. (e.g. carry 2 or more variants for that gene).

Some may feel that FMO3 is still the most likely candidate gene for most cases, but it would seem sensible to also consider any ENZYMES (and so their GENEs) that may cause a smell. 

23andme and Heritage DNA consumer tests
Possibly you can look up these genes in various consumer DNA tests.
Probably they will not give info for the full gene codes, but often they show various fault codons.

Some disorders that may fall in this category
Isovaleric Acidemia.
FMO3 smells.

Possible Campaign Aims (write to politicians/health leaders etc)
Get Newborn DNA Screen Programs to test for FMO3 variants.
Create 'MET-BO' PROFILE TEST that includes the above enzymes/genes.

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