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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

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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
rareconnect.org TMAU

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Blog Archive

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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Monday, September 21, 2020

possible Fluxovas TMAU study ?

1st post on possible Fluxovas-TMAU study.

The makers of FLUXOVAS, a lab at ...
Department of Pharmacy "Federico II" University, Naples
have been in very helpful communication with MEBO since we contacted them.

There is a bit of confusion in the situation (logistic complexities, perhaps translation etc) ... but it seems they are keen to get a Fluxovas - TMAU study going in their lab, with 20-30 volunteers needed ?

We are posting with haste (with their permission) to get the project going and see how it evolves.
Apologies for any misunderstandings.

It seems a contact point for sufferers who wish to 'register an interest' is their email :
nutrapharmalabs@unina.it

quote :
To collect memberships in the blog, people can write to the email 
address nutrapharmalabs@unina.it, which is the common email of our 
laboratory where my colleagues ... also read.

They have kindly let us post most of the recent emails (to get things going)

They write :

For our initial research we are interested in elucidating the 
potential mechanisms of action of Fluxovas polyphenols in reducing 
serum TMAO levels, and one of these could be an effect in blocking its production of intestinal precursors (TMA). 

As you already know, we are investigating in this sense, following all possible options (microbiological studies, chemical analyzes, etc.).

Obviously it takes time, as this is a very complicated topic. However, we hope that in next months we will be able to gain new insights from our experiments.I promise you that as soon as we have new results, I will inform you.

In the meantime, we are also interested in a potential clinical study 
in patients with TMAU, aimed at evaluating the ability of Fluxovas to 
reduce TMA levels. This clinical trial would confirm our in vitro 
studies. In this sense, we are also developing a mass spectrometry 
method for quantifying the levels of TMA in a biological sample. As 
with microbiological studies, this also takes time, because we usually work with blood samples, and in this case, we have to work with urine. But nothing is impossible, it only takes time!

If you want, (and I would be happy) you can support us in organizing 
this clinical trial, for example by recruiting potential volunteers 
and / or a research institute interested in collaborating with us (eg 
for sample collection, patient monitoring, etc.) It would be a very 
interesting project, with international collaboration for the first 
clinical trial on the effects of food-derived bioactive compounds on 
TMA levels in TMAU patients.

In Italy too we want to do something similar. The problem is that getting urine samples from the US for analysis is complicated. If there were any research institutes interested, they could send us the samples.

If not, the only parameter we can check with you is the smell, although you already explained to 
me that it is not enough, but at least people could try the product 
for free.

To collect memberships in the blog, people can write to the email 
address nutrapharmalabs@unina.it, which is the common email of our 
laboratory where my colleagues ... also read. 

... (here they suggest emailers copying MEBO into the emails sent ... but for now we are unsure if this is what they would want, so do not suggest this currently) ... 
 
In my opinion, people should indicate their name and surname, 
age, sex, diagnosed pathologies and any ongoing treatments. Clearly 
they should then give their feedback regarding the use of the product. 

When we have new interesting results from our studies we will inform 
you, but as I have already told you, the times are long and we can 
only proceed in small steps

***

It's ok for me to post my answer in the blog.
To answer your questions, it is obvious that the best thing would be 
to choose for our tests, patients with diagnoses, so they have the 
possibility to dosing TMA before and after the use of Fluxovas.

Unfortunately I understand that this is difficult, my proposal could 
be this: choose about 20/30 people, preferably with diagnosis and who 
can do TMA dosage, if we cannot find these patients with diagnosis, 
other people without diagnosis can participate to have their feedback.

We are a University, it is clear that we will guarantee patient 
privacy without ever disclosing people's names and surnames. We will 
provide the product free of charge to these 20/30 patients so that we 
will have an initial approach to the disease as we continue our tests.

As for the online pharmacies, I see many that sell Fluxovas:
https://www.efarma.com/fluxovas-30-compresse.html
https://farmacievigorito.it/integratore-fluxovas
https://www.farcomed.com/integratori/fluxovas-integratore-per-la-circolazione/
I know these that I have listed for you and they are serious and the 
price is good. Please note that in pharmacies the product has a retail price of 26 euros.

However, I would prefer to recruit patients through the official email 
I indicated to you. We are an institution and the rules require me to 
do so.       

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A EURORDIS and NORD Member Organization

2 comments:

Anonymous said...

How about just combining Fluxovas with DMB? I should think that, along with 500 mg of Mega-Resveratrol
would be quite effective.

Sep 22, 2020, 10:36:00 PM
Dr. Cozzolino said...

Hi there,
if you need info in english about fluxovas you can find it at:

https://www.farcomed.com/integratori/fluxovas-integratore-per-la-circolazione/#english

For further informations email us at benessere@farcomed, we can deliver fluxovas in Usa and other countries.

Thank you, best regards.

Sep 23, 2020, 12:18:00 PM
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