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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
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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

8 year old Tennessee girl repeatedly sent home from school for body odor

This is a news story which has hit headlines recently. A 8 year old girl is continually sent home from school due to having an offensive body odor. The mother says she bathes daily. Of course it is not possible to guess what the cause is, though metabolic malodors is one possibility that springs to mind, such as trimethylaminuria.  

News articles on the story : : School official speaks; little girl suspended 24 days for smelling bad
Daily Mail UK : Schoolgirl, eight, sent home from class more than 20 times because of 'foul odour'
Washington Times : 8-year-old Tenn. girl suspended from school 7 times for body odor

Relevant contact details :
Here are contact details should anyone wish to contact the relevant authorities about the subject in this case
Ron Dykes : Office of the director of schools, Washington County
Washington County Schools board members


Anonymous said...

WOW....thank you for the post. It shows there are more people affected than I ever thought, and of many different age groups.

Apr 5, 2013, 10:20:00 AM
Anonymous said...

Home schooling, social services, neglect, I agree perhaps to ensure the safety of a child investigation may be warrented, but a huge thank you to everyone bringing light to unexplained body odors, to those who may think their techniques can eliviate our anxety, to those in ssi who think we can be gainfully employed please see all points of view and the complexity of this condition. I have completed my first bucket list and my second bucket list is open ended and i continue to do things on my bcket list. I go out and experience life, but that child can not control the scool kicking her out anymore than I can control an employer firing me or refusing to hire me.

Apr 5, 2013, 10:33:00 AM
Maria de la Torre said...

This behavior from the education system is a true measure of the extreme degree if total ignorance of the physical and psychological needs of children who suffer from a medical condition resulting in uncontrollable body/breath odor.

The burden of educating society falls on each and every member of our international community around the world. MEBO Research only offers all sufferers the opportunity to raise awareness from the comforts of our respective homes, but it is up to each sufferer to take action and copy and paste and send the email...

We must not only think of our selves, just take a look at the faces of our children! They too could have inherited, or their children could have inherited this...

Apr 5, 2013, 11:03:00 AM
Anonymous said...

Oh no....I read the comments from the news article online..the family is poor. Low income neighborhood. The mother does not have teeth so its obvious she is not hygenic and used meth. Also distgusting inbreed and sleeping with animals..also a cotton ball causing decay in the sinuses etc....shows psychologists and doctors annd ssi how people are judged based on appearances and economic status. These steryotypes are disabling and life crippling for suffers. Look at pictures of me and where I live and non of those steryotypes apply to me. That little girl does not deserve steryotypical judgements and iggnorant cruel people involved...I will email everyone you listed!!!!!!! Be productive and try to help the girl or stay out of it..........unfortunately we share the world with hurtfull people. I will email everyone.

Apr 5, 2013, 12:27:00 PM
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