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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect TMAU

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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

Sunday, September 29, 2019

MEBO and Smart Nutrition (UK)

The cheapest way to access the SHEFFIELD TMAU URINE TEST
via Smart Nutrition (Brighton UK).
Europe orders should go through ok.
MEBO gets a £5 donation.
Only 2 known 'TMAU urine test' consumer options in UK.
The other costs £399.

TMAU urine test for consumers in UK
Regular readers may know SMART NUTRITION (based in Brighton UK) has been the easiest and cheapest way to access directly the UK TMAU Urine test done by Sheffield Children's Hospital (NHS).

This service via Smart Nutrition was started around 2010, at MEBO's instigation.
MEBO knew that Biolab (London) could access NHS tests, but they required an 'approved orderer' 3rd party to actually order the test, and suggested Smart Nutrition as the 3rd party, who kindly accepted. Before MEBO asked, Biolab was not aware of TMAU.

MEBO Donation £5
Due to a misunderstanding, the donations to MEBO were not paid. But when asked about it recently (thanks to a kind forum members instigation), Smart Nutrition contacted MEBO to say it had been forgot about, and  immediately offered to rectify this with a donation of the estimated number of tests taken (about 112 est.). Thank you to Emma at Smart Nutrition for sorting it out.

Sheffield TMAU Urine test (the good and bad)
The Sheffield Test was started around 1997 by in-house biochemist Nigel Manning, using his own method. It was known worldwide as giving the most TMAU1 and TMAU2 diagnoses.
Nigel retired around 2015.
Around 2016 the machine broke and a new method was used for the new version of the test.
Since then the TMAU1s have halved and there are no TMAU2's.
The new method used is similar to that used at Denver.
Probably the majority (the 'mild's) will now be negative for TMAU, whereas in the past many would be positive.
An opinion is the test is not very fit for purpose, but it's all we have.
Political pressure on the lab, or preferably a new 'community-approved' test would seem appropriate.

'Buying the TMAU urine test'
If you want to buy the UK test, currently there are only 2 options (both ordering the Sheffield test).
1. Medichecks : £399 (no link given due to the price).
2. Smart Nutrition : £213 UK ... £233 Europe

So for now, MEBO is happy to endorse Smart Nutrition as the 'best' way to 'buy' the Sheffield TMAU urine test in the UK and Europe.
Ideally the community would have our own sourced test, which would cost maybe £100 (?), but the law, and 'finding a network' has been a barrier we have not been able to overcome.

So for now, for anyone in UK & Europe that does want to test, MEBO recommends  :

SMART NUTRITION for the Sheffield TMAU Urine Test.
£213 UK.
£223 Europe.
You are sent a kit (with hcl), and get the full report.
MEBO gets a £5 Donation

MEBO has been talking to Emma recently, and it may be that other Biolab tests may be available (some are already on the Smart Nutrition site).
Biolab used to have a gold standard 'candida test', the ethanol blood test after a sugar load, but sadly do not do that test now.
Biolab has interesting tests but could be seen as perhaps 'indirect' tests (other than TMAU and 'leaky gut').

We will keep you updated

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