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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
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BO Sufferers Podcasts

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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
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MEBO survey for Dr Hazen click here
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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

MEBO Research Clinical Trials

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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