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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)

Monday, May 2, 2011

TMAU (Trimethylaminuria) urine testing in the UK for £170 and £177 in Europe

tmau testing ukMEBO Research is pleased to announce an arrangement in the UK with Smart Nutrition to offer the trimethylaminuria urine test via mail order for £170 in the UK and £177 in Europe. Through Biolab Medical Unit, the test is sourced by the Department of Clinical Chemistry, Sheffield Children's Hospital where Nigel Manning, Principal Clinical Scientist, performs most if not all of the UK's TMAU tests.

One of the goals of MeBO Research is to make trimethylaminuria testing more widely accessible. In the UK, the only test source currently known of is Sheffield Children's Hospital through NHS. Unfortunately, NHS will not allow people to test directly (even for a fee), so we have been looking for ways to get around this obstacle, in order for people to test directly for a fee if they wish.

Through an arrangement with Biolab and smartnutrition.co.uk, we are now happy to offer the TMAU urine test for £170 (£177 in Europe), which is the least costly in the UK for those who wish to test directly. In the future we are looking for other sources and to bring the price down; however this is the best we can offer for now.

The test is available online here,
scroll down on the page to order your test:

A voluntary survey for MEBO Research is added to the form, so that MeBO can collate the anonymous data for future research (hopefully). Smart Nutrition has also kindly offered to donate £5 off the price to MeBO Research, as noted on their site. An anonymous copy of the results will also be sent to MEBO Research.

Smart Nutrition Website
Each customer will receive a PDF copy of their results directly from Smart Nutrition with a brief interpretation, as well as a PDF giving general information about TMAU. The founder of Smart Nutrition, Emma Wells, Dip ION, NTC, CNHC, is a Nutritional therapist, lecturer and health writer; and, she may also provide further consultation advice for a fee, to those who wish to do so. Emma was not aware of TMAU when we first contacted her in early 2011, but is has been researching and developing a nutritional program for sufferers, that we hope will also expand to include nutritional therapy for other types of body odor conditions. These consultations are not part of the arrangement with MeBO Research, but we mention it so people are aware of the service.

In the UK, it should be noted that the test can be done via the NHS without charge.

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