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

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at UK Findacure conf 2020

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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
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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, November 27, 2013

New research paper on Isolated Persistent Hypermethioninemia

Paper title :  Spectrum of mutations associated with methionine adenosyltransferase I/III deficiency among individuals identified during newborn screening in Japan.

by : Nagao M, Tanaka T, Furujo M. Source Department of Pediatrics and Clinical research, National Hospital Organization Hokkaido Medical Center, Sapporo, Japan

pubmed link to abstract :  isolated persistent hypermethioninemia research paper

It has been noted in the blog before that  isolated persistent hypermethioninemia (IPH) is another known cause of 'metabolic malodor'. There is not much interest in this as it is generally regarded as being 'benign' (i.e. symptomless) apart from a malodour (probably in a transient form).

Only the abstract is free to read, but from the abstract it seems this is a similar paper that geneticists tend to do about metabolic disorders, i.e. checking out a small group of 'sufferers' to check the gene at fault for the sufferers' variants/mutants etc. They estimate that in Japan the 'disorder' may affect about 10 in a million, but 'facts' of these disorders tends to start on the conservative side and tend to focus on 'severe' genetic types. So it is presumably unknown how many may have this disorder in a more 'genetically milder' 'transient' form.

They also claim in this paper that it may not be a 'benign' metabolic disorder (i.e. malodor is not important) as some in their group had  "brain demyelination or neurological complications"


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