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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
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

Tuesday, August 17, 2010

TMAU testing through Nigel for persons outside the UK





Nigel Manning
Principal Clinical Scientist
Dept. Clinical Chemistry
Sheffield Children's Hospital
Sheffield


email : Nigel.Manning@sch.nhs.uk


Nigel Manning, Principal Clinical Scientist, who performs the TMAU tests in the UK through NHS and most private companies, has informed us that anyone in the world can test for TMAU through him as long as “the samples are sent by express courier to arrive within 2 days or as soon as possible.” You would need to contact him to determine if more than 2 days are acceptable in your specific case. He gives us an Instruction Packet for the patient to give their doctor that includes an explanation of TMAU and the testing process, as well as the step-by-step instruction of how to prepare and ship the specimen.

His fee is £134 + tax or approximately 160 Euros, subject to £/Euro or £/other applicable currency exchange rate (the patient is responsible for shipping charges to get the specimen to the lab in a timely manner). This includes additional testing for dimethylglycine if the TMA test result is normal.

Do keep in mind that if your ration (TMA/TMA-oxide) is borderline and requires clarifying, Nigel might request a further sample to confirm the first sample and exclude the possibility that bacteria in the sample itself caused some generation of TMA. This would be considered a standard follow-up involving checking a repeat culture before TMA analysis. Nigel tells us that,
The second sample should be collected during a period of odour - if necessary it would be best to have a meal high in choline 3 hours before the second sample (eg 2 eggs and baked beans on toast).

If you have been tested already outside the UK and received a negative TMAU result, and/or you wish to see if you would be diagnosed with Secondary TMAU in the UK, you might want to consider testing through Nigel. In this case, it would be best to email him a copy of your current results to consult with him beforehand for him to determine if he would test you again. If the Secondary TMAU test comes back negative, Nigel will then test for dimethyglycine without additional charge. Keep in mind that you would still need your doctor’s order for the test and you can give your doctor Nigel’s 2-page packet.

We extend our gratitude to Nigel for being so very supportive of our international community’s needs.

María de la Torre
President and Executive Director
MEBO Research
maria.delatorre@meboresearch.org
www.meboresearch.org

Related Posts:
New Trimethylaminuria document from Nigel Manning
Part 2 of interview with Nigel Manning
Interview with Dr. Robin Lachmann, PhD, MRCP, Consultant in Metabolic Medicine
UK Trimethylaminuria testers can contact Nigel Manning to ask questions about their results

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