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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
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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, November 17, 2009

Trimethylaminuria article in 'The exceptional parent' 2003 by Rick Rader

This is a 2003 article about attitudes towards trimethylaminuria by Rick Rader, a 'medical futurist', logically predicting the future for people with neurodevelopmental problems. He was invited to the 2nd Trimethylaminuria workshop in 2002 to speak about the Psychosocial Aspects of The Trimethylaminuria Experience.

His initial attitude towards TMAU, when compared to other health disorders, is probably typical, but as he meets sufferers he realises what a devastating mental affect the condition has on the sufferer. Indeed, it should be regarded as a disability.

...In many ways, trimethylaminuria is a model of the entire negative discordance directed towards people who seem different to others. It's the template disorder for all conditions that cause people to disengage from social affiliation. While social affiliation is not unique to our species it is indeed the center of our existence, our cement and our prevailing universality.

Trimethylaminuria seems to be a disorder that most certainly could have had its roots in classic mythology. These spellbinding stories are used to explain our random and threatening universe, natural phenomena, character flaws and our dark side. There must be a tale in Norse mythology that explains how this curse came to be. It seems too significant an entity to blame on the flavin-containing monooxygenase 3 enzyme (FMO3). Surely Odin could have grown tired of dealing with the wolf Fenrir, the monstrous offspring of the fire god Loki, and burdened him with the eternal odor of Jormungand, the giant sea serpent. The stench of a rotting sea serpent would probably get any Norse god's attention. I like that explanation much better than that of some enzyme gone amok...

... When eight-year-olds with trimethylaminuria confide in you that they wish they had cancer or needed to use wheelchairs or had third-degree burns, so they wouldn't have to explain the unexplainable to their classmates, you get a clear focus on the depth of their despair. When their embarrassment and social phobias confine them to closets and shut them off from school, sports, parties, friends and the richness of life, then you can start to appreciate that disabilities come in all forms. Extrapolating from the definition of art, anything that disables is disabling...

Full article
Rick Rader's 2003 trimethylaminuira article : On being downwind of disrupted lives


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