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

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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
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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

Thursday, April 4, 2013

PROTEST: Suspended from school 24 times - body odor


You can email from anywhere in the world.

Message from Karen, MEBO Research Public Relations Director, UK

Hi all,

Maybe some of you may already have heard about this tragic story of a child of 8 who has been suspended from school because of her odour condition.

I think it is shocking stuff and I think it would be good if our community could come together to support the family and educate Washington's education system about odour conditions.

I intend to send the letter attached via e-mail to the 15 schools in Washington contactable via the following link ; to Karla Kyte (elementary education director), Shannon Bishop (school health supervisor) and Susan Kiernan (public relations), (all contactable via the following link(go to Board of Education page then Quick links then telephone directory) and also the board of education directors (I have listed their e-mails below).

The gist of my e-mail will be:

As a British primary school teacher and a sufferer of metabolic malodour disorder, I was outraged to read about the case of the eight-year-old child in a Washington school who was suspended because of her pungent odour. Although I realise that the majority of people, including medical professionals, are ignorant about metabolic odour disorders such as Trimethylaminuria (TMAU), I am very disappointed that an educational establishment within a country which claims to be forward-thinking and tolerant of people’s differences, can react in such a damaging and hostile manner towards an innocent family in need of support.
Undoubtedly, the victimised child concerned has an incurable metabolic disorder beyond her control. The actions of the school have:
  1. shown a complete disregard for the psychological wellbeing of the child and family.
  2. further increased the mental scarring of the young person having to deal with this socially alienating condition.
  3. stigmatised the disorder to such a degree that the child and her family will have lost faith in their ability to lead normal lives. (No wonder the poor parents went to the media . They had no choice!)

I would suggest that the school:
  • apologise to the family immediately.
  • research the disorder on the websites:,, breathandbodyodour.proboards,
  • educate the school population about the disorder and ensure that the child is supported through it.

A EURORDIS and NORD Member Organization


Anonymous said...

Also remember, if you test negative for tmau that does not mean its hygenic there are other conditions we have yet to figure out how to diagnose and name. I ask adults...WHY would anyone CHOSE to be unhygenic and live life this way????????. Do you think psychological issues????? At 8 years old a parent could fill the bubble bath pick out clean clothing and know their child is hygenically clean..if an investigation is needed to prove to adults and teachers that parents are taking care of their young children o.k. but see the children are being taken care dare an adult in authority interigate a young child by the way emotionally stressing the child while tgey do it and then quote the child and form conclusions based on it..she said she does not remember bathing..that is a typical response for a child if their scared and don't know how to answer they respond with I don't know or I forgot..for fear of answering wrong and not knowing how to work with children in school you should know better.....

Apr 5, 2013, 10:48:00 AM
Anonymous said...

When adults interrogate a child they feel scared nervous confused etc, they have limited coping skills etc, they often respond to questions with I forget, I don't know , I don't remember , for fear of answering wrong. Fear of getting in trouble, getting someone else in trouble. Not knowing how to answer because they can't figure the adult or situation out. Not understanding why you are asking or what you will do with the answer they give you etc..
Its simple common sense if you have ever been around scared children..and schools deal with children daily..they should know beter..shame on those adults in authority having control over a confused scared child....

Apr 5, 2013, 10:57:00 AM
Maria de la Torre said...


Apr 5, 2013, 10:59:00 AM
Anonymous said...

The scared confused child has no idea what the consequence of their answer will be..what you as an adukt in control will do with their answer..that's why they answer with I don't know. I don't remember. I feels like the safest answer for the child...that child should feel safe not interogated....

Apr 5, 2013, 11:02:00 AM
Maria de la Torre said...

"The child should feel safe, not interrogated!"

Apr 5, 2013, 11:06:00 AM
Anonymous said...

our little sister.we have to explain her parents that she has tmau because they dont know.

Apr 6, 2013, 12:40:00 AM
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