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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

Full details :
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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

MEBO Private Facebook Group
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Join/Watch the weekly
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, October 3, 2008

Fecal Body Odor : same as drinking very diluted sewage water ?

With regards what is known on the forums as 'Fecal Body Odor' (amongst other fecal/gas type smells), everyone is obviously mostly distressed about the smells. However there must be a good chance they feel as bad as they smell, since those toxins seem to be circulating in the blood (hence the smell through the skin). In effect, it must be similar to habitually drinking very diluted sewage water. Not enough to make you acutely ill, but enough to make you feel permanently vaguely unwell. You could think of it as having a low grade gut infection, rather than acute poisoning. A sort of auto-intoxication seems to be going on. Whilst the medical system is highly primed for acute infections, they don't seem much interested in quality of life 'low-grade' complaints. Currently the few research papers that mention a fecal body odor would likely be to do with very serious liver damage, whereas we know that it would be possible for someone with FBO to win the Olympics marathon or any sort of achievement. Even with trimethylaminuria, the PH is very alkaline and when it is in high levels in the blood, it can't be too good for the blood circulation which needs to keep within a strict PH.

So if people with Fecal Body Odor feel bad about poor concentrating and suchlike, don't be too hard on yourself, because as well as the smell you are likely to be pretty much suffering mildly untreated poisoning. Probably most/all can think of it as having a low-grade constant gut infection.

Hopefully someday the syndrome will be fully understood and recognised.

Poll below

click here for Bloodborne Halitosis poll


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