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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 :
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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

MEBO Private Facebook Group
to join : go to
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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, May 2, 2010

Possible cheapest route to TMAU testing in the UK : E-med

Note : It seems that this option is likely not possible at this price. They will most likely refer you to TDL, who charge around £160 for the test. So the final price would be £160 + £20 + £15 = £195

Update : This option does not seem possible and is not recommended

Update : UK TMAU urine test now available direct via MEBO Research

e-med offers consultations with your own private online doctor by e-mail or in person.

It takes just a few minutes to join, then you are ready to consult as soon as your membership is approved.
For those who wish to do the trimethylaminuria urine test without a doctor and pay for it themselves, it can be difficult to find access to such tests. In the UK, the current suggestion MeBO Research makes is to test via Mullhaven lab. Sheffield Children's Hospital is the only known actual TMAU test lab in the UK, and if you see the test available anywhere else, it will likely be sent to Sheffield for testing. Mullhaven lab is the cheapest we know of, costing around £193.

However, a better route may be to join E-med, which is an online 'doctor's surgery'. It costs £20 a year to join, then £15 per 'consultation', which they say involves as many emails until you feel satisfied with the consultation. They can arrange tests etc.

Sheffield Children's Hospital charges around £140 to anyone accredited to request such NHS tests (such as a private Dr), so testing through E-med should cost around £175 for testing, and include an email consultation from a surgery who currently have not heard of TMAU, but presumably over time will learn.You could also contact Nigel Manning directly to discuss your results, as he has said he would be willing to help interpret it for you.

So, if it proves possible to TMAU urine test via E-med, this would be the way MeBO would suggest testing for TMAU directly in the UK if you don't mind paying. If anyone tries testing this way, or knows a cheaper route, please let us know what you thought.

Remember that the test is available for free on the NHS.

Note : It looks as if E-med accept customers worldwide, so this may be a way for people in Europe to test direct without a Dr if they so wish.


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