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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)

Monday, September 1, 2008

UK news : Trimethylamine urine test is now on Medichecks site

UK News:

For those who wish to test for TMAU in the UK direct at their own expense : The Trimethylaminuria Urine test has been added to the Medichecks site but is £285 (rather than the £199 they first said). The email says:

"We have now added the test to our website. The price has changed as we have had to use a different laboratory as the original laboratory no-longer performs the test. The new price is £285."
Latest details are (subject to corrections):
The test includes
testing for the TMA-N-oxide amount (this is the important bit. Primary TMAU is the inability to produce normal amounts of TMA-N-oxide, the normal non-smelly finished metabolite)
Presumably they also test the amount of (unoxidised/smelly) trimethylamine as well. Too much of this is secondary TMAU. Anyone can have too much TMA in their urine.
They do not provide the choline capsule for the challenge dose. Choline can be cheaply purchased in any health store. Once we get details of how much is used as a challenge dose is, we will let you know (or someone can tell us)

http://www.medichecks.com/test.cfm?test=FOS

Its likely this it is done by the/a NHS test lab that normally tests for TMAU but this is unconfirmed.

Please note the purpose is to give people every option possible to test. You can test for this free on the NHS. With a private Dr it is around £125. Medichecks is very expensive but it gives people the option of testing on your own. Feel free to tell us or post on the forums how the Medichecks testing process went, if you want.

UK Trimethylaminuria testing options
(constantly updated. New info welcome)

1: NHS - free ? for urine and DNA test (please check). GP may need convincing.

2: Private Doctor: Urine test around £130 plus Drs fee. DNA test ? There may be ways around this to enable you to test without seeing the doctor for a small fee to the Dr. We are investigaing this

3: Self-test - Medichecks the only current known self-tester supplier. urine test-£285

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