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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 - 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

Friday, July 9, 2010

comment from pediatrician about TMAU

A comment was posted yesterday in our post on the TMAU story in Chat Magazine, purporting to be from a pediatrician, Dr Laura P. Shulman. We cannot confirm if it is genuine, but the advice is a good general rule for people who feel they have systemic body odor. That being: an ordinary Dr is likely to not know anything about TMAU, but there is probably a better chance a pediatrician will be interested in investigating it, since they are trained to look for inborn errors of metabolism in very young children. Even though secondary TMAU is the non-genetic type, it is natural that someone with an interest in genetic TMAU will also become familiar with the secondary type.

It's so unfortunate that this poor man suffered from not only his socially crippling condition, but also the all-too-common indifference of the physician to his complaints. Instead of pricking up his ears, or, better, his nose (!) to the patient's description of his problem, the doctor in question poo-poo'd it. Ironically, if he'd gone to a pediatrician instead of an adult or family doctor he would have had his diagnosis straight away. Inborn errors of metabolism are something we're bred to detect!
Laura P. Schulman, MD, MA, FAAP

Sadly even TMAU may not be on the radar of most pediatricians, but it would seem they could be more interested. Nowadays there are often Adult Metabolism Units as well, such as the one run by Dr Robin Lachmann in London. However, even in a typical AMU, there is a good chance they will be unaware of TMAU. This is why most people at the moment prefer to miss out society's medical system and just test direct instead.

Hopefully, over time, the community can make all pediatric units and adult metabolism units (or similar) aware of TMAU, so that sufferers in the future do not have to go through the lack of a diagnosis and dismissiveness of today, where people can go undiagnosed perhaps for decades.


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