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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

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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

Monday, March 29, 2010

What we did in the 2010 Nashville Meetup

Our 2010 Meetup in Nashville, Tennessee was an experience I will never forget. We all came together from far away places like London, and a few people did a road trip of a couple of days in each direction to attend from far away places like Connecticut, Texas, New York, Washington DC, Maryland, Virginia, the Carolinas, Georgia, Florida, Ohio, and areas surrounding Nashville. Those who could not attend joined us in the webinar on Saturday! It was truly a pilgrimage - a life altering experience for so many of us.

We bonded so well as we shared our experiences and knew that those we spoke with could relate totally, as we listened to see what worked for some and thus found some direction. I was finally able to meet so many of my friends in the US in person! I can't say enough about how important this whole event was for me. I feel that so many close ties were solidified. We will never again feel distant from each other as we had before.

Let me tell you a little about how our weekend unfolded. I began with my flight to Kentucky on Thursday to meet with another sufferer to then go together to Pawsibilities Unleashed to pick up our prospective Service Dog, Vallie (Valentine Snow), and to meet Liz Norris, Master Dog Trainer. Liz showed us alot of training techniques, and our purpose for bringing 4-month old Vallie to the meetup was intended to be part of her ‘social training’. It was quite impressive just how very well trained Vallie already was in the short few months of her life!

We drove to Nashville with Vallie from Frankfort, Ky on Friday, and began meeting with other people who came to the meetup. I was very pleasantly surprised when a young man approached me as we entered the hotel and introduced himself as a member of our community who wanted to know the schedule of the meetup so that he may attend. Everything was just uphill from there! By the time the Manger’s Reception started around 5:30pm, many of us had arrived. We gathered in the lovely atrium where we enjoyed the cocktails (alcoholic and non-alcoholic) with popcorn and/or tortilla chips, as we listened to live entertainment.

Afterwards, we decided to go eat at Ruby Tuesday’s in the 5 cars some of us had done their road trip on. Vallie was so well trained that she stayed under our table, as Service Dogs are supposed to do, throughout our whole dinner experience. By this point, we had already had the opportunity to talk about our experiences with our conditions to each other, and the bonding was really coming to fruition. We felt like we had always known each other and would be friends forever although it had only been a few hours into the meetup. We returned to our hotel to rest in order to start our meetup refreshed on Saturday after our breakfast buffet.

Even though I had only had one drink with very low alcohol content on Friday and ate healthy, I unfortunately developed a very bad migraine at 5:00a.m., with constant vomiting and diarrhea for 5 ½ hours, to the point of dehydration. I had to miss the main event of our meetup at the Governor’s Suite, since I couldn’t open my eyes because I couldn’t stand light or sound. However, as I laid in bed in total darkness, I could hear everyone talking and sharing in the main room, and I could tell everyone was feeling good, especially as I heard and enjoyed the spontaneous outbursts of laughter throughout the session and the heart-felt clapping when it was over. People would come into my room from time to time to let me know just how wonderful it was turning out. I was so very happy to hear this!

I also heard that Arun and about 16 people joined the other 17 of us in the social webinar, making it over 30 participants in our meetup. Blue Sky Collector and Glenna did their presentations as others helped in whichever way they could, including passing out the samples of body odor/halitosis products for us to give feedback to the manufacturers on. Nonetheless, I hear that there were significant technical difficulties and that alternative platforms may be used in the future.

Unfortunately, I couldn’t leave my room the whole day, but everyone enjoyed going to Ellendale’s for a luncheon buffet in a private room at the restaurant. All returned to the Manager’s Reception again on Saturday night, as Vallie kept me company in my room. I was able to hold down a bowl of soup and toast for dinner, and later in the evening, a small group of people came to visit with me at the Governor’s Suite and stayed well into the night.

During Sunday’s buffet breakfast, I met all the other wonderful people that I had not met on Friday or Saturday. I was sooo happy to have met them after all! I felt so close to them, and they all seemed to have such a peaceful ‘look’ about them in contrast to their more tense and nervous initial one when they arrived in Nashville. It was at that moment that I was convinced that our meetup had been successful. I could see the ‘high’ in their eyes. This is what it’s all about!

So we went back up to the Governor’s Suite, after Sunday’s breakfast, and we went over the paper written by Nigel Manning, Principal Scientist, Sheffield Children’s Hospital in England entitled, TMAU – diagnostic testing at Sheffield Children’s Hospital. All TMAU urine tests in the UK, Ireland, and some from other parts of the world are done in his lab. Nigel wrote this paper specifically for our meetup, and I wanted very much to discuss it with everyone on Saturday so that we may all learn from it. However, since I was sick, Glenna was kind enough to go over it on Saturday with the group, and we discussed it again on Sunday when I was able to participate as well. More about our discussion of this paper will be forthcoming on another post.

As our discussion came to an end on Sunday, more of us had to leave to catch our flights or to hit the road, and the remaining group went to eat at Chili’s and to visit the Parthenon. It was a rainy day, so after some quick shopping, we went back to the Governor’s Suite again to spend the rest of our time together well deep into the night.

And so ends our meetup, as we each go our own separate ways, but with a new heart and a new sense of belonging to a very ‘rich’ and bountiful community capable of giving ‘life’ and hope to each of us. I can't help but feel inspired knowing that this is just our first meetup in the US. Quite a few of us were talking about flying to London in September to attend the London meetup at the Thames Festival as well. It is an addictive experience.

My heartfelt thanks goes to everyone who attended in Nashville, all who joined us in the webinar and in spirit.



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