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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)

Tuesday, April 20, 2021

UK Politician looking for 'disability ideas'

for UK readers ...
Vicky Foxcroft MP (UK .. Labour).
Shadow Minister for the Disabled.
Looking for ideas to form Disabled Policy UK.
UK readers can write (?)
You need to upload a text file


Vicky Foxcroft (UK MP ... Labour) is the UK Shadow Minister for Disabled People.
It seems she is looking for ideas to form Labour Policy on Disabled issues.

UK readers could therefore probably fill in this form about TMAU/FMO3/Metabolic Malodor etc.
Like most politicians, they are not very tech-savvy, and so you will need to upload a text-file rather than just fill an online form.
Using a PC (Windows), you could use Wordpad.
For Android or Iphone you may need to use a text-file app. 

TMAU is probably the most referred 'disorder' to Adult Metabolic Units, yet Vicky won't have heard of it, as no-one has told her. 
Metabolic Units test the referrals for TMAU, 90% will be (false) negative, so they will log that it's not a big problem, plus its trivial compared to all the other disorders they see.
It's a chance to get TMAU on her radar at least.

The chances of anything useful happening from it (other than awareness) are pretty slim, but better than nothing, and who knows ? 

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Saturday, April 17, 2021

Messina Lab Sicily wants FMO3 results

Sidoti Lab
Medical Genetics clinic
Messina University Hospital, Sicily Italy

The Sidoti Lab in Messina has taken an interest in TMAU and FMO3 over the last few years.
They have done a few TMAU/FMO3 papers, and look to be continuing.

They request you send your FMO3 / TMAU result to them.

After contacting them, it seems they are interested in FMO3/TMAU results data.
They request you send such data if you wish.
At this initial stage, it's unclear what exact data.
Perhaps a best option is to contact them and ask.

Sidoti Lab Messina TMAU contact email : infotmau@unime.it  

It is possible that this lab is the best hope for TMAU/FMO3 people currently.
They also TMAU test, as well as publish papers.

The website is in Italian.
Chrome Browser gives an option to translate to other languages. 

Some quotes from Sidoti Lab Messina

"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 or severe form"

"We would like to receive the results of other patients. The more data we can analyse the better it is!"

"We can accept both kind of data Whole genome and clinical FMO3 tests of each patient."

"regarding the patient's results we prefer Whole genome raw data (FASTQ is better, when avalaible; otherwise the BAM file could be useful for us but, in this case, we also need the exact reference genome -eg. Hg19 or Hg38- used for mapping)."

"If it will not be possible, The Clinical FMO3 tests (we suppose you refer to a list of FMO3 variants) could be also suitable for our analysis."

"Anyway, how many patients are you speaking about?"

Quotes from the Sidoti Lab Messina website :

This site is managed by a group of researchers from the University of Messina that deals with 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 Cell Biotechnology”, as well as a specialist 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. 

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Thursday, April 15, 2021

Google stopping email subscription service

Google is stopping its Blogger email subscription service (via feedburner) in June.

This means readers signed up to the MEBO Blog email subscription service will no longer get new post email notifications after around June.
It's hard to understand this decision. They also done away with Youtube email sub service last August.

So unfortunately, those with the email sub service (around 470 currently) will no longer be notified of new posts.

We will let you know of any other ideas on this subject. 

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A EURORDIS and NORD Member Organization