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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
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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

Wednesday, December 9, 2009

MeBO-Biolab full case study : The tester #5 writes about the testing process

Our ‘full case study’ volunteer, tester#5, was tested at Biolab Medical Unit (UK) recently, and she has written us feedback about her experience there as noted below, and she has kindly shared the story of her testing process with the community.

She had the following exploratory test panel done thanks to the 25% discount offered by Biolab, £125 the MeBO paid thanks to donations received, and tester#4's contribution of £318. In total, the 10 tests performed cost £544. Our gratitude goes out to all who made this possible.

London clinic ORGANIC ACID TEST £140

The tests chosen were limited to what was kindly on offer fom Biolab, and also by cost limitations. The tests should be seen as only a starting point, with many areas not covered by the testing and the results do not imply that they are responsible for the odor problem.

By doing this exploratory test panel, it is hoped that some of these results may guide us to further testing in certain areas. Whatever the results may be, they may be only part of the total picture, but hopefully lead us in the right direction toward discovering the total picture by obtaining answers in a scientific manner.

The clinic was really easy to find and the staff were friendly and welcoming. The nurse who did all of my tests that day was really lovely. I was at the clinic for four hours in total as the breath hydrogen test took three hours but the nurse made it very easy for me. She was really sensitive and sweet and I felt at ease with her. I'm always a bit nervous having my blood taken but I didn't feel a thing because she was so gentle. I usually have bruising afterwards when I go to the hospital but didn't get this at all. I think the nurse knew who had referred me and why I was there but she didn't question me about my condition at all which I was glad about. At the end she said she had enjoyed treating me and hoped I would get some answers and the help I need. She also explained everything to me really clearly and respectfully.

I was a bit nervous before I went but felt comfortable there and not awkward at all. It also helped that another tester arrived from our group who I had already met before at a meet up so the four hours didn't seem quite so long! The clinic has a large waiting room and a smaller area to sit in which is separate outside the nurses room. There was a steady stream of other people arriving for tests but no one made any comment about smells or reacted in anyway which I was glad about. Thanks for setting everything up for me Maria -- I really appreciate it and hope others take advantage of the testing too. There really is nothing to be worried about. It may seem a little expensive to some but I really think its worth it when I think about how much money I have wasted on useless tests and treatment that I really didn't need. At least these tests will give me some indication of what's happening with my body and we also have the benefit of a doctor to help interpret the results. Hopefully if enough people test we'll also be able to see some common patterns emerging which will help everyone in our community who doesn't have a clear diagnosis. If anyone is thinking about testing and has any questions please let them have my details so I can help.


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