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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
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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

Tuesday, December 27, 2016

UK TMAU testing : Bright 2017

Sheffield Children's Hospital is/was the only source in the UK (and Ireland) for the trimethylaminuria phenotype (urine) test.
Due to a machine fault, it was suspended in autumn 2016.
Now Sheffield and other UK NHS Metabolism labs plan to offer the test.
A MEBO Campaign may have played a part.

Good news (UK)
Our understanding is that not only will the Sheffield lab have the test running again soon (estimate : late January 2017 ... next validation check will be Jan 9th), but possibly due to a campaign by MEBO and the TMAU community, it seems that other UK NHS labs are looking to offer the test. This could lead to new opinions and innovations. It seems likely that new labs may switch to Liquid Chromatography ( as the MEBO test uses), which is seen as a better method than Gas Chromatography, and seen as the future method (for standard 'practical' labs). For now, Sheffield is continuing with it's proven method using Gas.

MEBO Campaign
UK MEBO director Karen James spearheaded a campaign to get the test reinstated as soon as possible. This included contacting (e.g.) politicians (Health ministers, the UK Health Committee). It seems they did contact NHS labs about this. Emails were also sent to REGIONAL UK NHS labs that specialize in metabolism. This may have played a role in other UK labs now looking to offer the test.
Perhaps this can inspire others in other countries.

It seems a private sector company which is probably an offshoot from the NHS, VIAPATH, may also offer the test. It's unlikely this will be direct-to-consumer. More likely they will supply organisations who provide the test to Health Professionals. But perhaps ways can be found around that.
VIAPATH website
The UK NHS metabolism test labs seem to communicate via METBIO, which is a sort of 'union' for them.
METBIO website

Overall, TMAU testing was looking at a crisis in 2016, and now is looking much better. With now more than one lab expected to test in the UK, and possibly innovation and new views on the (conservative) TMAU1 reference range that Sheffield had.

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