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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO Karen
at UK Findacure conf 2020

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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
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

Friday, January 6, 2017

MEBO 2017 Primary Objective, "Solutions Now"

I would like to share with you some of my ideas about the direction MEBO will take in 2017, and would appreciate your input. Please write your comments and recommendation below on this post. Let me know if you would like to be a MEBO volunteer and what work exactly you would like to do. Keep in mind that all the MEBO staff are all volunteers.

MEBO has been around since 2008/2009, and we have carried out the Biolab Gut Dysbiosis Study in the UK with interesting results.

MEBO supported the NORD Fund for DNA research, by posting about it.  This fund raising program had already been established by Cheryl Marshall before I ever discovered TMAU.  The funds were awarded to the Monell Center, who came up with interesting results on their DNA study of TMAU.

MEBO started the Alveolar Test Study with Menssana, which was actually much too costly than I had hoped to MEBO and to the participants, and unfortunately, the study bore no significant results.

Then, we started the MEBO TMAU Test Program with a lab that researched a way of inhibiting TMA production by gut bacteria. This was very successful, and as we wait for the supplement to come out in the market, manufactured by Proctor and Gamble.  In the meantime, we have also learned about DMB and Resveratrol helping to inhibit gut TMA production.

The Trinzyme Project for a therapeutic for TMAU was started with a UK Medical Council Grant for the 1st phase research study to discover a therapeutic to control TMAU. The first phase was very successful, but we are having delays in acquiring funding for the next phase of the project. Unfortunately, this very promising study appears to be taking a very long term in obtaining research funding.

MEBO also started a pilot study with the University of Alberta, Metabolomic Research Study in Canada, NCT02683876, at no cost to MEBO, and only sample shipping cost to participants. Irene Gabashvili, PhD, who is the Scientific Director of MEBO Research, will be assisting the Canadian lab in the analysis of the results in relation to body and breath odor conditions. If there are significant indications that would lead us to continue on with the research, we hope that Dr Irene will develop a program to offer individual consultation to participants to offer recommendations based on the results.

Now in 2017, I think our primary focus is:

"Solutions NOW."

I totally understand the need for long-term research-studies, and they are our secondary focus.  I do believe in supporting them, but I want to work with what studies have already shown us NOW. I am hoping that the Canadian study, that is looking beyond TMAU, will be a breakthrough for us, and that Irene, working closely with the University of Alberta lab, will provide us with some direction for more breath and body odor conditions in addition to TMAU. If so, we will have the gut TMA inhibitor by supplement and whatever Dr. Irene Gabashvili provides us with, based on each sufferer's individual metabolomic profile, hopefully within a year or two.

Even though the objective "Solutions Now" will be our primary focus in 2017, MEBO is still totally committed to pursuing long term research, that will hopefully provide us with some interesting information and protocol within a few years (5 to 10 years). We must not only think of ourselves, but also of the following generations of sufferers.


María de la Torre
Founder and Executive Director

A Public Charity
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Anonymous said...

I think we should definitely focus on getting funds for the Trinzyme Project so that it continues without delay.

Jan 6, 2017, 12:55:00 PM
Anonymous said...

Thank you for your work. Every day gets harder to deal with this, but it is nice to know there are people working hard every day for a cure for this horrible disease.

Jan 6, 2017, 4:07:00 PM
liz said...

Thanks Maria
Happy New Year for 2017

I found your post very informative as it is difficult to find out what research is actually happening for . Hope is essential to maintain a positive attitude!

Are there any more details available on the outcomes from the Trinzyme project ?

There was a thread on TMAU off UK enquiring about crowd funding for research for TMAU so I will try to cross post your post so that people know things are moving on.

Jan 6, 2017, 4:46:00 PM
Anonymous said...

This is a truly inspiring objective.

I recently learned from a Google search that Ataluren, another drug that might be helpful, has been approved for use in Europe but not in the United States. I wonder if some of the TMAU people living in these countries might try the drug, evaluate its usefulness for TMAU, and thus help along the FDA approval process here.

Another point: the Synergy Company in Moab, Utah has developed several new products based on the DMB research: grape seed extract, resveratrol, and a multi-ingedient mix called "Heart Health".

Jan 6, 2017, 4:54:00 PM
Stephanie said...

I'm very excited and appreciative of the work Maria and Mebo are doing to further advance knowledge and awareness and possible treatments.
I am very interested in the newest program learning about other possible metabolites that could be producing odor.

Jan 8, 2017, 4:50:00 PM
Anonymous said...

Maria so is the Cleveland Clinic tmao project definitely successful? Because the last article I read said the dmb wasn't strong enough for the human body so they need to find another way.

Jan 15, 2017, 8:25:00 PM
blogcontributor2 said...

hi. Cleveland keep very secret about their TMA-blocking pill but we can be sure its definitely going ahead. They have signed a deal with P&G. It turns out they wont use DMB as not strong enough, but they will use some other compound they already know. I guess its all top-secret. Sadly we wont hear anything probably until the press release. it could be a while yet.

Jan 15, 2017, 9:59:00 PM
blogcontributor2 said...

that should say

'but will use an even stronger more potent compound they have found. but for now it's top secret so we dont know what.

Jan 15, 2017, 10:00:00 PM
Anonymous said...

That's good to hear. I hope it works on us sufferers and also suitable for vegetarians :)

Jan 16, 2017, 7:40:00 PM
Anonymous said...

The solution may be achieved by going forward to the pharmaceutical companies. The proposed drug will probably be expensive as TMAU is a rare disease, but it is worth to think about both ourselves as sufferers and next generations.

Mar 6, 2017, 2:49:00 AM
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