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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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to join : go to
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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

Wednesday, November 16, 2011

Educating dental practitioners this month NOVEMBER 2011

As she did in March 2011, our very own, Karen James (username Malory), is spearheading yet another campaign to raise awareness in the UK, and this time in the dental practitioner community.

Please e-mail the contacts below with a brief account of your experiences (frustrations at looking for cures etc)
Karen (username malory) has written a post in MEBO's Forum (quoted below) asking us to join her in this venture this month of November. Let us show Karen the same support we gave her with her campaign in March. It was most successful with questions for research posted by the medical authorities in the UK Library of NHS Evidence website of the National Institute for Health and Clinical Excellence (NICE), UK Database of Uncertainties about the Effects of Treatments (UK DUETs).

Karen James tells us:

We know that many sufferers of systemic odour conditions have bloodbourne halitosis and/or TMAU. We need to keep raising awareness among others. It would be a good idea to target dental organisations to raise awareness of these conditions so that people can be directed to the support networks they need and not waste time and money going to ‘specialists’ who claim they can cure halitosis.

Please e-mail the contacts below with a brief account of your experiences (frustrations at looking for cures etc) and perhaps paste in the MEBO Research international petition link also so that the extent of the problem can be appreciated by the recipient.

It would be great to make this an international effort and I would happily e-mail/contact any contacts in the US, Australia or anywhere else which others may provide. (British Dental Association)
(Faculty of General Dental Practice) (British Association of Dental Nurses)
online form to be submitted at http://www.General Dental Council
online form to be submitted at http://www.British Dental Health Foundation
online form to be submitted at http://www.NHS Choices
online form to be submitted at http://www.British Association of Dental Therapists

The link below is a petition created by the registered charity MEBO Research which can be signed online to help raise awareness of the condition internationally.

If you are uncertain about what to write and would like to discuss it before submitting your testimonial, please do so in the thread Karen started in MEBO's Forum, or send Karen or me a rough draft for us to look at first, please feel free to email it to us, and we'll get back to you.


We don't have to be UK citizens to write our testimonials,
All are welcome and each one will carry a very important message.


María de la Torre
Founder and Executive Director

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La dentist said...

Nice blog specially the information about halitosis given by karen james.The information is very useful. Thanks.

Nov 29, 2011, 7:23:00 AM
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