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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
to join : go to
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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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Blog Archive

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

Sunday, December 3, 2017

London Meetup yesterday. Karen describes ...

Karen is the longtime organiser of London Meetups.
Here she describes yesterdays London Meetup.
Royal Festival Hall, South Bank, London.

On Saturday 2nd December some of our community chose to meet up on the South Bank in London. The 4 of us chatted for about 4 hours.

Apart from exchanging ideas, we discussed the issues raised by the UK 'TMAU test' survey. It seems that people are finding it more difficult than ever to acquire a TMAU test via the NHS General Practitioner. Some doctors are even suggesting their malodour-suffering patients are mentally unstable and have asked for evidence (for example, pungent clothing!) as a basis for granting a test via the NHS! We are all aware that the NHS has budget restrictions, but we are all adamant that we have as much right to use the NHS, and, therefore to have the TMAU test,  as any other UK citizens.  Another worrying issue we talked about was the higher prevalence of negative test results since 2016. Some people, who tested positive several times prior to 2016, are now testing negative. We are very worried about this trend.

But we didn't just talk about the problems faced by our community. It was a great day out because the weather was perfect and the venue was stunning. South Bank had 7 Christmas trees and the view of the Hungerford and Waterloo bridges, River Thames and the London Eye, was lovely at night. Loads of pubs and restaurants have outdoor areas with heating now, so we were spoiled for choice. Central London at Christmas time is really special.

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Maria de la Torre said...

So happy that you guys were able to get together and had a great meeting, beautiful day, and great venue!

Good topics were discussed to be followed up whenever possible.

Dec 4, 2017, 7:54:00 AM
Anonymous said...

An organization named dermetel is selling dmb supplement for $125. Is this legitimate or a scam? No one answers the telephone number and when traced it leads to a cell phone line in Kent.

Dec 16, 2017, 1:26:00 PM
Anonymous said...

This DMB supplement is being produced by Dermetel,org, a non-profit organization based in Washington, D.C. You can look it up on Google. It appears to be a legitimate product, altho we will need to know more about the background of testing, approvals, etc.

Somebody needs to check this out! "If not us, who; if not now, when?"

Dec 27, 2017, 2:46:00 AM
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