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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
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, January 27, 2009

Orphanet and list of potential contacts for trimethylaminuria help

Perhaps if anyone enquires by email, they may agree to do testing. Adult Metabolism Units would seem natural first choices of contact.While it is very difficult to find known testers of metabolic body odors and/or halitosis, the technology is probably readily available worldwide in, for example, hospitals. Detection of the smelly compounds probably being possible using a gas chromatography/mass spectrometry machine or by Proton NMR spectroscopy or similar. These are usually present in metabolism units in hospitals, usually for pediatric units or adult metabolism units.

With something like trimethylamine, it's presumably a case of them calibrating the GS/MS to look for that. For those who feel trimethylaminuria doesn't seem a sole answer, they could possibly be tested for any volatile organic compounds rather than just trimethylamine, or just malodorous volatile compounds.

Orphanet seems to be a European based website giving information on health problems and possible connections. In their section on TMAU, they have a list of 'clinics' and 'diagnosis centers'. On first glance most don't seem to list trimethylaminuria, (although more do than expected), but they all seem to be metabolism units of some sort and will have the technology. Usually they use them to detect amino-acid disorders or organic acids. Perhaps if anyone enquires by email, they may agree to do testing. Adult Metabolism Units would seem natural first choices of contact.

These links (and the ones in the sidebar in the section : "Peer Evidence for Experts") may be helpful in persuading them about trimethylaminuria and it's prevalence :

Listed contacts for trimethylaminuria on Orphanet
Orphanet trimethylaminuria link : clinics
Orphanet trimethylaminuria link: diagnosis


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