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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

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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
or contact
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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Blog Archive

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, December 4, 2008

Women's Conference Call Yesterday: a synopsis by Debra

We had a great chat with Tisha, Trish, Glenna, Melissa, Sherri, Lori, a few others and we pretty much covered the full gamut. Here's a quick rundown of our 2 and a half hours for those that missed it, in case it inspires some thoughts.

  • Our symptoms, (sometimes odd) behaviour, and experiences have really shaped our perceived personalities, adding a conflict between our interior and exterior personas. People aren't allowed to see our true selves.
  • Holiday travel and visits pose a special challenge with long car rides, people hugging you up close, staying as a guest in others' homes and bringing our own special food to eat. We might offer to pay for the extra water we use in our multiple daily washups. Not to mention having to explain why it's all so necessary.
  • We had 4 Capricorns on the line and started talking about birth signs and personalities. Would it be alright to add a Birthdays link on the left to acknowledge each other's special day?
  • Goat milk soap seems to be a possible remedy for dry skin, now that icy winter's here.
  • Bizarre sink and bathtub rings that appear after we wash, but not for others, especially after we've eaten dairy or meat.
  • Musty towel smells after one or two uses.
  • Clean sheets in the closet that take on a sour smell after "fermenting" in there for a few months.
  • Taking activated charcoal internally and using it externally around the house, car, office, etc.
  • Going to funerals where everyone is wearing black, but if you're wearing any kind of powder, watch out because it'll be sure to surface somewhere.
    Being offered copious amounts of delicious food at social gatherings, but trying to hold back and stay on your special diet while at the same time appear polite and appreciative of the hospitality.
  • We are "chosen ones" blessed with the ultimate challenge of building strong and meaningful relationships and contributing to society with purpose while enduring exclusion and isolation.
  • A really good piece of exercise equipment for your lymph system is the rebounder (mini trampoline). Probably helps muscle tone as well. Easy, cheap, small, convenient. Do it 15 min a day for the rest of your life.
  • Harnessing the power of our group's talents and skills to do something really great. Play to people's strengths.
  • Know that there are probably some very influential and powerful people reading our posts, possibly even listening to our calls. It might not be time or wise for these people to come forward right now but know that some heavy help might be in our future or in the silent background.
  • Excitement about the Miami meetup, and who's going.
  • How our message board has greatly improved since a year ago. More positive and proactive, with a closer group. Maria's arrival was a pivotal moment
  • Staying at home gives us delicious relief from public scrutiny, yet leaves us feeling isolated and sometimes lonely. This group is a godsend.
  • We should share lots more of our lives with the group: family, school, job, weddings, births, sickness, deaths, volunteering, achievements, travel, events, special activities, and the like.
Physically, we're getting better and better all the time. Or at least feel that way.


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