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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

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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

Monday, June 22, 2009

Testing for Trimethylaminuria in Australia : One person's experience

A lady from Australia has kindly given permission for a post she did in the Rob's Yahoo TMAUcure forum to be reprinted here. It encapsulates the difficulties of the current process of TMAU testing in Australia, and gives an insight to the procedure. Thank you for allowing us to repost it.

It is posted so that Australians wishing to test can get an idea of what to expect, and also allows a comparison to other testing protocols throughout the world. For instance, a 'morning urine' sample is used, whereas Dr Fennessey in Denver seems to use a '24 hour period' sample.
I received a bill for my first urine test. It was $70. I did have a pathology slip so I don't know why I had to pay. Perhaps my doctor did not tick "bulk bill" on the slip. This urine test was sent from Victoria to Brisbane by the pathology company. The invoice says CaSS Pathology QLD. They test for TMA only, not TMA oxide.

A more reliable test is done in Adelaide, where they test for TMA oxide as well as TMA levels. It is done at the Royal Women's and Children's Hospital in Adelaide. I had mine sent from the Royal Children's here in Melbourne. I just rolled up with my pathology slip. Adelaide only accept urine samples from two hospitals in Australia. I am not sure where the other one is. If you would like further info, then send me an email. I did not receive a bill for the second test. I am not sure why, maybe it was because it was sent by a public hospital.

For both tests, all I needed was a pathology slip. My doctor used a Dorovitch slip. Both tests came back negative even though I loaded up for four previous days.

Urine must be frozen within an hour or so and kept frozen in transit.

follow-up email: The writer wished to add more to her original post for clarification purposes. Thank you again for being so helpful.

I feel that what I wrote previously needs clarification. This is what I was advised to do:-

It is best if the urine sample is a morning sample (more concentrated). Use a container that holds around 100ml (the norm) and collect enough urine to almost fill it. Put the lid on straight away. It is best to do it at the collection centre where it can be frozen immediately and then kept frozen in transit. You must insist on this and perhaps write it on the container.

If distance from the centre is a problem, you can produce the sample at home. I was told that it is ok to refrigerate it for a short time until you are ready to leave. As long as the container is tightly sealed and not allowed to get above room temperature, there should be minimal loss over several hours. When you are leaving put it in an esky with ice and take it to the pathology/collection centre. It is best not to freeze it at home because it may defrost in transit. So leave the freezing to the collection/pathology centre or hospital.

I made up my own mind to load up with choline for four previous days but I was told to eat a meal containing fish or two eggs 1-2 hours before I collected the sample ie. breakfast.


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