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

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MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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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

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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

Friday, November 11, 2016

UK NHS TMAU Test Campaign : Health Committee

Sheffield TMAU urine test 
Discussion :
It seems the UK NHS (and probably all national health systems) do not have a 'rare disorder test strategy' outside of those disorders that are part of the National Screening Program. Possibly there is also not a 'test strategy' among the health system rare disorder test labs, meaning it's probably up to the staff/management which rare disorders they decide to test for, and often it will mean a rare disorder may have only one national lab testing (if at all), and no secured source of the test.

As we move ahead with TMAU testing (and indeed for all rare disorder tests), it would seem a good idea if governments have a 'rare disorder test strategy' which will be a law the national labs must respect.

One possible way to put pressure on UK labs to have a national strategy would be to contact the Parliament Health Commitee. Sometimes they look at cases, perhaps even just for a few hours.

An aim would be to order the UK NHS rare disorder labs to have a strategy to make TMAU urine testing available at all times (e.g. not relying on one source) and preferably being available at more than one lab (preferably many/all) to perhaps drive up standards, drive down cost etc.

An ideal option would be to be able to test direct, but it's unlikely the committee would approve this, as health systems are set up to 'protect the unwell person' or something. In reality this policy creates a monopoly/cartel/regressive system. The committee looked at this system for HIV testing an made direct testing an option (i.e. they looked at how the system affected testing for a serious disorder).

message from Karen, MEBO PR Director, about the UK Health Committee     

Another place to contact regarding a request for a specific policy regarding NHS TMAU testing:
Health Committee - examines policy issues related to the Department of Health and its associated bodies.

Health Committee
House of Commons
Telephone: 020 7219 6182


Whether the Sheffield lab test is restored or not, it should be a priority for our community to get a reliable, accurate testing facility established in the UK. The phenomenon of false negatives is not uncommon, and people may need to test more than once. A secure test is needed in any case.

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