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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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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
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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

Friday, November 2, 2012

In New York City three days after Hurricane Sandy

As announced in a few previous post, I came to New York City from Miami, FL, today, as planned before Hurricane Sandy was brewing in the Atlantic Ocean, to meet with a Menssana Research scientist and with sufferers who had expressed interest in providing their breath sample for the Alveolar Breath Test on November 3, 2012. When this severe storm later slammed into the Northeaster United States, with the eye of the storm entering through New Jersey and leaving behind total devastation, I assumed that the participants of this study would prefer to re-schedule this session for another time. When I asked each of them if they would like to re-schedule, I was very surprised to get a unanimous "NO" response, and all wanted to test as scheduled in spite of the hardships. There was only one participant who I have yet to hear from.

After having lived through a devastating hurricane myself, Hurricane Andrew in Miami in 1992, and knowing full well the journey all who have been affected by such a natural disasters must undertake in its aftermath, I could clearly appreciate the depth of the state of desperation all sufferers have to find a solution to malodor conditions when I see their insistence in giving their samples under these conditions. Therefore, in the spirit of solidarity, I embarked on my journey at 4:30 Friday morning towards storm-torn New York City, to help these sufferers carry out their determination to be a part of an exploratory research study in pursuit of answers.

On my 3 1/2 hour flight to Kennedy Airport from Miami, I watched a News Special from a local New York news station that was focused solely on telling the story of the storm's aftermath.

One of the main consequence of the storm is the shortage of gasoline for transportation, which is paralyzing the city that cannot easily commute, and thus goods and services become scarse. There are 2 million people without power who have had to struggle to stay warm in the cold of dark nights. Little did I know that I would be one of those people. After all, I was going to a hotel that told me that they were taking in guests, so I just assumed this meant that the basic necessities would be provided for at the hotel.

When I arrive, the lobby was filled with US Customs agents and law enforcement officers that had come from all over the country to help in this crisis. I heard horror stories of local citizens who were victims of the storm sleeping in the hotel lobby the previous nights because they had no place else to go.

What I didn't expect to find was that the hotel didn't have power, was working with very limited power produced by a generator, the toilets were not flushing, and there was no hot water or lighting in the rooms. I later found out that all surrounding hotels were in the same predicament.

The lobby did have limited power, and everyone in the lobby was frantically looking for some electrical outlet to charge their cell phones and laptops, because we all knew that there was no power in the rooms, which meant no TV or internet, and that it would be a very dark and cold night.

There were not enough employees who could make it to work to clean the rooms nor was there water to clean them with. My flight arrived at 12:30pm and I was finally given a hotel room at 5:00pm. I knew I only had one hour left of daylight coming through the window, so I had to hurry to get settled in. Thankfully, by then, the toilets were flushing, the room had been cleaned, but the water and the room itself were freezing cold.

All I could think of is of the many sufferers in the northeast, through a few southern states, and all the way to the midwestern states, who were also living through this same reality. I felt deeply for all of these sufferers, and I was glad to have had this opportunity to share this journey in solidarity with them. This perseverance that I share with them to fight together through all obstacles without allowing ourselves to be defeated, will lead us to significant research and we will find a cure! Sharing these trials together only strengthens our resolve!

I was hoping that the power would return to this hotel to offer the sufferers coming tomorrow the opportunity to take a warm shower here, if they don't have power in their own homes. However, as I sit in this pitch-black very cold room, it looks like all I am able to offer is the opportunity they have asked for - for them to give their breath sample.

I look forward to meeeting them all in person tomorrow. I am also most impressed at the dedication and support the Menssana Research Scientist, Mayur Mundada, has demonstrated by his insistence in bringing the BCA instrument at 7:30a.m. tomorrow to be ready for our first participant at 8:00a.m., and to stay with us until all participants have given their samples.

Anyone wishing to join us tomorrow is welcome to come:

135-30 140th Street
Jamaica, NY, USA 11436


María de la Torre
Founder and Executive Director

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Baguio said...

The lengths you have gone to - just taking this in isolation - truly are admirable. I wish I could be as selfless and altruistic - but I very much doubt I could match your efforts!

Nov 4, 2012, 2:40:00 PM
Maria de la Torre said...

Thanks, Baguio. In addition to my concern and commitment to sufferers, there is a very deep driving force in me- a sense of powerlessness, that has overwhelmed me for years. It makes me feel like I just don't do enough to change things enough, so as to be able to shake this feeling off. I hope that some day, it will go away, so that I may find peace.

Nov 5, 2012, 12:10:00 AM
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