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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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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

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MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Tuesday, April 30, 2019

Conference Summary & Survey: Is your halitosis an SELENBP1 mutation?

Summary Conference
Ron Wevers, PhD.
In collaboration with a small group of TMAU sufferers, the VKS organized the first official national conference for people in the Netherlands and Belgium dealing with odor conditions, including TMAU. The conference was conducted in Dutch, and our MEBO Mental Health Director, Crissan Rosalia, was kind enough to translate it for our international community.

The presentations were done by Professor Ron Wevers, PhD., Faculty of Medical Sciences, Radboud University, who has been researching halitosis for many years and who has been supportive to our international community, see all posts in this blog on Dr. Wevers (scroll down to see all), and by dietician Erasmus MC Rotterdam.

Click on icon in the upper left of this post for the summary of the conference.
The conference presentation includes the following:

• Halitosis
• Metabolic conditions
• Characteristic of odors
• SELENBP1 defect – cabbage /rotten egg odor
• Diagnostics and Treatment options for SELENBP1 defect
• TMAU type 1 & 2 and treatment
• Future research ideas for the community of malodour patients
• Presentation from dietician Erasmus MC Rotterdam

Professor Wevers has a couple of suggestions for us as Crissan explains:

His advice is to gather as many people as possible with the same symptoms and characteristic odor types. Then bundle these cases and apply for testing at Radboud Hospital simultaneously, then the lab can compare the DNA results. This might help the lab to find similar mutations amongst the dna samples. The challange is going to be the funding of course, patients might have to pay for the test out of their own pocket. And referral from a physician is still needed.

Click on icon for survey
Based on information Dr. Ron Wevers, PhD., has provided us, Crissan created a screening questionnaire for SELENBP1 that sufferers can fill out to check if they might have an SELENBP1 mutation.

Link to the questionnaire and disclaimer:

Our whole international community is very grateful to Dr. Wevers, dietician Rotterdam, Crissan Rosalia, and all others who worked very hard to bring this conference to fruition.

Some information on Dr. Wevers' work:

"Wevers : New gene suspect for METABOLIC MALODOR : SELENBP1"

Pubmed : SELENBP1 abstract paper

Dr Wevers webpage

Media links on the story :
Medical Xpress
Science Daily
UCLA press release

María de la Torre
Founder and Executive Director

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Unknown said...

How about here in winnipeg canada? Please give me all the details of the presentation. I would like to know more of my condition (tmau). Can I give you my e-mail or can you send me via e- mail the whole presentation. Thank u

Apr 30, 2019, 8:40:00 PM
Simone said...

When we can do this test?

May 7, 2019, 3:29:00 AM
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