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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
rareconnect.org TMAU

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Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

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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