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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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UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

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)

Friday, April 1, 2011

MEBO-Eliapharma TMAU test results of first 38 samples




The lab in Canada that MEBO Research has contracted to perform our International Test Program, Eliapharma Services, Inc., has been working on analyzing the TMA levels, TMAO levels, and creatinine of the 38 samples of 9.9mL urine and 0.1mL HCl that were immediately frozen after collection and expediently shipped to the lab using International Priority Shipping.

Painstaking efforts have been put forth to ensure that a professional service is rendered to our community in multiple areas, the international shipping process, the kit and collection process, and the analysis of specimen.
The CEO of this lab, Samir Nassr, takes much pride in his work, since he is a perfectionist, as scientists should be. At the onset of this program, he purchased trimethylamine (TMA) from a chemical company in order to use it to calibrate the LC-MS/MS Bioanalysis equipment for this test. Even so, when he began working with the 38 urine samples, he initially began doing a trial run with actual live urine specimens in lieu of the TMA provided by the chemical company to validate the analytical methods. He was somewhat satisfied with the reading for the TMA and TMAO levels, but wanted to “fine tune” the calibration for the creatinine. He has repeated some of the tests yet again to ensure perfect accuracy.

I must add that I feel very secure with his professionalism, as he is the owner of this lab and takes pride in his work. Samir assures us that once he is satisfied with the validation process and results, future analysis will be performed much more quickly. We expect the frequency of analyzing batches of specimen to also be much more frequent, depending on how quickly we can get a batch of 30 samples. At the rate we are getting them at the onset of MEBO’s International Program, it could be once a month, and hopefully eventually every 2 to 4 weeks.

Painstaking efforts have been put forth to ensure that a professional service is rendered to our community in multiple areas, the international shipping process, the kit and collection process, and the analysis of specimen. We do appreciate that it has taken some time to do so, and truly appreciate the patience of everyone involved. We do tend to be a time-sensitive society, and the urgency of getting results to have answers is of the utmost importance to the individuals involved. However, accuracy and a seamless and professionally operated process are even more important to ensure that sufferers are getting accurate results and real answers to their odor problems. Therefore, we are now working not only on providing accurate results, but also on putting a professional presentation explaining TMAU and its management protocol for the physicians of those persons who get a positive result.

We are currently still working on these results to provide them as soon as they are ready. You patience is greatly appreciated as we diligently strive to help those participating in this program get accurate answers as well as the proper information to assist in communications with the respective physicians.

Our next shipment of kits is going to go around the globe to countries as far as Australia, Continental Europe, and the Americas. We are looking forward to initiating our new dealings with these and other Customs Agencies from around the world, as much meticulous preparation has been put forth to ensure a smooth process.


If you would like to test in our
MEBO International TMAU Testing Program,
please fill out the following,


MEBO-Eliapharma TMAU Test Requisition/Survey Form



María

María de la Torre
President and Executive Director

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