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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

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Blog Archive

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)

Wednesday, June 22, 2016

TMAU Test Program resumes July 5, 2016


I'm happy to announce that the MEBO TMAU Test Program will resume on July 5, 2016. Currently, MEBO has a wait list of approximately 230 persons who interested in doing this test, and each person on the list will be contacted in the order their requisition was received.

If you did not provide all the information requested by the online Requisition Form, please do so asap, or your name will be skipped until all others on the wait list have been worked.

United States shipments of these 230 persons will be processed first to expedite the process of clearing the wait list, followed by clearance of international shipment on the wait list. Afterwards, all new requisitions will be processed.In addition, only those applications that are completed with all the required information needed to obtain shipping cost information will be processed. If you did not provide all the information requested by the online Requisition Form, please do so asap, or your name will be skipped until all others on the wait list have been worked.

If you are interested in doing the MEBO TMAU urine test for $150 plus round trip shipping cost, please fill out the online Requisition Form, and your information will go on a list to be serviced after the current wait list is processed.



MEBO Research
International
TMAU Urine Test

Click here for online application form,

REQUISITION FORM
SEE UPDATES HERE
$150 plus
shipping costs

for one test,
$250 plus
shipping costs
for 2 tests over time.


TWO PAYMENT PLAN OPTION
Send email to maria.delatorre@meboresearch.org to arrange, AFTER filling out Requisition Form, please.



Test analysis performed in batches of 15 to 20

DATE: 22 JUNE 2016
Now on : Program Resuming 5 July 2016
Samples analyzed since June 2012 : 287

Test analysis performed in
batches of 20

I have personally volunteered my time and administrative and billing services for this test process in order to keep test cost as low as possible. I hope that this low cost, high quality test will consequently be affordable to all sufferers who wish to know whether they have Primary TMAU or Secondary TMAU.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br (MEBO Brasil)
diretoria@mebo.com.br
The MEBO Blog (English)
El Blog de MEBO (español) 
NORD Member Organization
EURORDIS Member Organisation 



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3 comments:

Anonymous said...

It would be nice to know how many people out of the 230 actually suffers from this condition. Also good for the medical records, I guess more awareness.

Jun 23, 2016, 11:01:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

An approximate calculation of the 287 tests performed by MEBO is that approximately 5% of those tested received positive results for Primary TMAU, and approximately an additional 25 to 30% are positive for Secondary TMAU. A more precise calculation needs to be done to eliminate data from those who have tested more than once. These figures are not an exact calculation.

Jun 24, 2016, 12:08:00 PM
Deb said...

Hi Maria, I would like to know if some international sample is tested positive.

I'm from Italy, the urine sample will arrive intact and in good condition to be analyzed? I am afraid that the trimethylamine evaporate during transport.

Thank you in advance

Jun 27, 2016, 6:17:00 PM
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