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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)

Friday, October 16, 2009

Australian Trimethylaminuria Foundation now has a TMAU store for Australians

The Australian Trimethylaminuria Foundation is continuing it's aim of finding ways to raise funds for Dr John Christodolou's TMAU research proposal. As well as a TMAU store for the USA, it also now has a store for Australia. By clicking through the links and purchasing whatever you want, the ATF will get a % of the purchase. It's a good way of raising money within the community, for the purpose of research. and the best bit is that you are buying things you would want anyway.

Bluesky announced the Australian TMAU store in the ATF yahoo forum. Here is the text :

Hello Australian members,

Have you heard of the TMAU Store yet? At no cost to you, you can support the Australian Trimethylaminuria Foundation simply by "clicking through" the store of links (make sure you click the link off the store, first), and then buying online as you normally would. A percentage, usually about 10-15% of the sale price goes to the ATF.

The products and stores listed are not limited to those for Body Odor, and there is even a Shop by Store page:
http://www.tmaustore.com/shopbybrand.php

However, the TMAU store is US-vendor specific-- or you would have to use "International shipping" (which can take a while to arrive).

Now there is also an Australian version of the store at:
http://tmaustore.com/australia.php

New vendors on this page include AUS/NZ based businesses such as:

Expedia.com.au
Healthstore.co.nz
Discount Vitamin Express
Cool Gifts (AU)
Apple AU
Apex Rent A Car Australia
Circuit Central
Eight Hotels booking (Diamant Hotel Sydney and Canberra, Kirketon Hotel Sydney, Hotel Altamont Sydney, Pensione Hotel Sydney, Pensione Hotel Melbourne, Cosmopolitan Hotel Melbourne)
Hotel.com.au
CheaperThanHotels (last minute deals)
...

there are a bunch more for Travel, Insurance, Vitamins, Baby, Pets, Auto etc.
You can still shop through the main "US-based" TMAU Store ( http://www.tmaustore.com ) and choose International shipping, most of the stores there provide that option.

Blue Sky

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