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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, September 24, 2012

TMAU/FMO3 webinar recording : Professors Shephard and Phillips

2ND Webinar on FMO3

This is the recording of the TMAU/FMO3 webinar that took place 23rd September 2012
Guest Speakers : Professor Elizabeth Shephard and Professor Ian Phillips
Webinar title : "FMO3 : bugs, genes and drugs"

The webinar was kindly hosted by Rob Pleticha of
You can see the original post on here : TMAU webinar has a TMAU community : TMAU community

This is the first in a series of webinars with TMAU/FMO3 experts as guest speakers. There was also a previous webinar where TMAU sufferer, MEBO UK Director of Public Relations, Karen gave a talk on how to use the media to advance the Cause of people living with malodour disorders: Karen's TMAU talk.

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Betty Wolcott said...

This excellent webinar enabled me to do a more informed set of internet searches on FMO3.

Question: if selenocysteine can override UGA stop codes, would it work on FMO3 mutations in the same way as Ataluren to alleviate TMAU symptoms? (Selenocysteine is available on Amazon.)

Thank you so much.

Oct 8, 2012, 2:16:00 AM
blogcontributor2 said...

Hi Betty

I don't know the answer to your question but it seems that people with nonsense mutations ('false stops') usually make up a small % of a 'deficiency' community. Usually about 5-10% (and nonsense mutations are usually very severe). So even if selenocysteine worked it would only work for say 5-10% of the community.

I guess there is probably a reason it won't work anyway, or they would be using that ?

Oct 11, 2012, 9:58:00 PM
blogcontributor2 said...

Hi Betty

Professor Shephard emailed a reply to me. Here it is :

There are ongoing clinical trials for cystic fibrosis where chemicals that allow stop mutations to be by-passed are being tested. If these prove successful then such treatments could be used for other disorders caused by stop codon mutations. However, it turns out that the base sequence on either side of the stop codon are really important in how well this approach works.

No clinical trials have been carried out to show that selenocysteine will overcome stop codon mutations. Such trials would have to be done on a protein by protein basis. Because each protein has a specific amino acid order. This order and identity of the amino acids is crucial for the protein to adopt a precise 3-dimensional structure.

Oct 27, 2012, 10:15:00 AM
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