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

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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
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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

Tuesday, August 5, 2008

Strategy to make your Doctor aware of TMAU (Trimethylaminuria) testing options

One of the most difficult obstacles in seeking medical attention for our body odor, is to CONSULT WITH OUR PERSONAL PHYSICIAN! It is such an embarrassing thing to do, and often too overwhelming, and we end up not addressing our body odor with him/her at all. In addition, we normally already have a good rapport with our physician, thus making it even more embarrassing to bring up the topic; it would be easier if he were and stranger and someone we would never see again.

Even worse, we may fear that he would arrive at the conclusion that we are crazy and that it's all in our minds, thus somehow severing the positive bond we have with our physician to a certain degree forever! That would change the way we feel about seeing this doctor in the future for any other condition at all.

So how can we 'break the ice'? How to face and overcome this obstacle?

What about writing a short letter and (e)mailing it to him/her one week to a month before our appointment, to preparing your doctor for this encounter. This is one way to break the ice, and it could serve to give her the opportunity to research Trimethylaminuria in advance to be better informed. Below is an example of a letter you might want to send. Make sure to copy and paste it to create a Word document, replace the red wording with your personal accurate information, then sign it, and mail it to him/her.

(Your name)
(your mailing address)
(your phone Lumber)


Dr. Soandso, M.D.
(Your doctor’s address)

Dear Dr. _____:

I have an appointment to see you on ___date______, and I would like to discuss with you a topic that is very embarrassing for me, and therefore, I am writing you this letter to help me communicate it to you. I have been told by others that I emit a very offensive body odor, which may come and go intermittently or may linger for days, and most importantly, it is interfering in my social relationships and work environment.

I have tried every kind of hygienic oral, underarm, and foot treatment…I have seen dentist, dermatologists, gastroenterologist, gynecologist, …. to no avail. I am attaching a form sent to me by the Mayo Clinic, who offers testing for a metabolic odor-producing condition, Trimethylaminuria, so that you would prescribe it for me to be tested through them. Please see the links below on information given by the National Institute of Health regarding this genetic disorder.

I would like to discuss this further with you in our appointment on [date of appointment], and I would appreciate all the help you can give me regarding this matter.


(Your name)

Links to websites on Trimethylaminuria by the National Institutes of Health:



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