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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect

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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Wednesday, February 10, 2021

TMAU Test in Italy : Messina

TMAU Test lab in MESSINA Italy


Medical Genetics Clinic
Pavilion F - Ground floor (Entrance F2)
Polyclinic “G. Martino ”of Messina
Via Consolare Valeria 1, Gazzi, Messina

Italy Messina TMAU test lab

Comment on the lab
It looks to be a University Genetics lab. Says 'Medical'. Possibly interested in TMAU mostly due to some research interest.  
They do seem to require any 'patient' to have a Dr referral.

Quotes from the site 

This site is managed by a group of researchers of the University of Messina who are involved in research, diagnosis, genetics and therapy of Trimethylaminuria ( TMAU ).

The operational core of our team consists of:

Prof.  Antonina SIDOTI , prof. associate of Biology and Genetics (BIO / 13) and head of the "Molecular Genetics" laboratory at the University of Messina, biologist executive of the "Medical Genetics" service of the Messina Polyclinic, deputy scientific director of the Euro Institute -Mediterraneo di Scienza e Tecnologia (IEMEST) of Palermo, of which he is also director of the department of “Biomolecular strategies, genetics and cutting-edge therapies”;

Dr.  Rosalia D'ANGELO , researcher at the “Molecular Genetics” laboratory of the University of Messina, biologist executive of the “Medical Genetics” service of the Messina Polyclinic Company;

Dr.  Carmela RINALDI , researcher at the "Molecular Genetics" laboratory of the University of Messina, biologist executive of the "Microbiology" service of the Messina Polyclinic Company;

Dr. Luigi DONATO , researcher at the Euro-Mediterranean Institute of Science and Technology (IEMEST) in Palermo, biologist and PhD in “Applied Biology and Experimental Medicine”; 

Dr.  Concetta SCIMONE , researcher at the Euro-Mediterranean Institute of Science and Technology (IEMEST) in Palermo, biotechnologist and PhD in “Biology and Cellular Biotechnology”, as well as specializing in “Medical Genetics”.

Dr.  Simona  ALIBRANDI , PhD Student in "Applied Biology and Experimental Medicine".

Prof.  Herbert Ryan MARINI , Aggregate Professor of Applied Dietetic Technical Sciences, SSD MED / 49, SC 06 / D2 - Endocrinology, Nephrology and Nutrition and Wellness Sciences, of the Department of Clinical and Experimental Medicine, at the University of Messina, and Equivalent Medical Director, UOC of Internal Medicine, DAI of Medical Sciences, AOU Policlinico “G. Martino ", Messina.

Prof.  Salvatore SETTINERI , associate professor of Clinical Psychology in the BIOMORF Department of the University of Messina.

Prof.  Maria Rosaria Anna MUSCATELLO , at the Clinical Psychology Unit of the Department of Biomedical, Dental and Morphological and Functional Imaging Sciences of the University of Messina, UOC of Psychiatry, AOU of G. Martino, Messina.

***

The diagnosis of TMAU is based on:

On the dosage of trimethylamine (TMA) and trimethylamine N-oxide (TMAO) in the urine . This analysis is carried out after the administration of 5g of choline dissolved in orange juice or by administering a fish-based meal (300g). This determination makes it possible to distinguish carriers of the condition from unaffected individuals. It is based on the determination of the ratio of TMAO to TMA with normal reference values ​​≥0.90.

On the genetic test , based on the search for specific variants in the FMO3 gene related to a more or less severe impairment of the enzymatic function. The FMO3 gene maps to chromosome 1q23-q25 and is made up of nine exons. However, some people with TMAU may not have variants in this gene. For this reason it cannot be ruled out that variants in other genes may contribute to the onset of TMAU. 

***

We inform you that starting from January 2020, in order to carry out the pre-test genetic counseling, it is necessary to obtain the prescription from the attending physician bearing the following wording "General visit code 897" and to book at the numbers of the CUP (Single Booking Center)  0902213976 or 0902213977 , from Monday to Friday , specifying that the genetic counseling will be conducted by Dr. Silvana Briuglia . 

Since genetic testing is not provided for the secondary form of TMAU, it is advisable to contact our working group through our contacts , before proceeding with the booking through CUP, in order to evaluate together if the conditions for the prescription of the genetic test.

We also inform you that for the prescription of the genetic test it is also possible to contact a medical geneticist in your region. In this case, for more information regarding the forms and sending the blood sample, you can contact our contacts.

***

For more information contact us at the following email address:

infotmau@unime.it

Or at the following telephone number (Italy) :

090-2213136

***
Email update from Messina Lab

Our lab performs the TMAU genetic test even for patients who do not live in Italy. The test is free because it is carried out with research fund money contributions, especially for patients who cannot pay or for any other reasons. Therefore we cannot release an official report, but we will be able to let you know if you have TMAU or not, in a mild o severe form

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