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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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Join/Watch the weekly
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

Thursday, September 25, 2008

Thanks to all the women who attended our Women's Conference Call tonight

On our Women’s Conference Call today many callers wanted to know more specifics about the Thames Festival 2008 Meet-up in London that I attended, such as what it was like meeting sufferers from various parts of the world, and what we discussed in the meet-up. I told my story, and we eventually wound up mainly talking about the various odor-reducing diets discussed at the meet-up that many of us have also tried.

A handy tool called Nutrient Checker was recommended to assist in our process of food selection as it has a great deal of information on the contents of the various food groups. See for help in this regard.

We discussed how each of us responds differently to the various foods, not only in the degree of odor they may produce in us, but also in our respective food tolerances and allergies. In the end, we realized that we also need to test our bodies for food intolerances and allergies in our efforts to create and maintain a diet that decreases our odor. We discussed cleansing diets, vegetarian, vegan, and dairy-free diets, low sugar diets, low choline diets, and the importance of consuming no less that 425mg of choline a day for women and 500mg for men.

The point was brought up about how a diet that is too low in choline and vitamins may produce the hair loss that many on the call seem to be currently experiencing. Biotin, also known as Vitamin H or Vitamin B7, is helpful in strengthening hair and preventing hair loss. We also discussed how a higher consumption of protein could produce greater energy, since some sufferers are feeling too weak on the low choline diet. Egg whites can be a good source of protein while on a low choline diet, although some people do not handle eggs and egg products well, but others do, so they can get an energy boost from it.

A big warning goes out to people on low choline diets regarding their vitamin B Complex selection, read the labels well. Many vitamin B complexes contain choline, and it will be noted on the bottle. So avoid those complexes that do have choline. It is much more fun to eat delicious foods for our choline daily requirement than to take it in a pill.

It seemed that the main need of the callers today was to discuss odor-reducing diets and to find out more information about the Thames Festival 2008 Meet-up in London. Thanks to those who participated in the call, it was very productive.


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