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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

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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
See RareConnect TMAU

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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

Monday, August 16, 2010

1999 Letter in the Lancet about 'periodic' Trimethylaminuria

Of the handful of researchers who have investigated trimethylaminuria, probably the most research into the physical side of the odor problem (rather than genetic research) has been done by Dr Stephen Mitchell of  Imperial College in London (Dr SC Mitchell TMAU papers on pubmed), most of his research being in the late 80's and 90's (very little over this decade) 

In this 1999 letter to the Lancet, he comments that in his experience, many sufferers who have TMAU  are likely to be 'carriers' who only smell periodically when their FMO3 enzyme is called upon to deal with bigger loads of TMA. He explains that they have no 'reserve capacity' as normal people do. It is interesting he chooses to reply to this medical paper done by Zschocke et al, since this paper demonstrated that TMAU can include those with 2 copies of common 'mild' FMO3 variants, again being a transient form of TMAU.

TMAU, if ever discussed at medical school, is likely still regarded as a disorder affecting those with 2 mutant copies, which typically is very 'severe' and rare.
  Over the past decade we have encountered many patients who have odour problems on a mild, transient, and periodic basis. These otherwise healthy individuals are presumably heterozygotes, or compound heterozygotes, who can cope with the daily burden of trimethylamine (TMA), but have little, if any, reserve capacity when stressed by other factors and may fail to metabolically breakdown trimethylamine. To raise the general awareness of this disorder and reiterate that it “is not merely a rare recessive disorder but rather a spectrum of phenotypes of transient or mild malodour” is important, but it is also imperative to realise that fish-odour syndrome is not a simple genetic problem and that heterozygotes (carriers) may have to endure a transient and more elusive form of this complaint initiated by various, less obvious, and more ephemeral, factors.


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