Thank you so very much, Daniel T-Mensah, for this incredibly awesome interview! You have done an excellent job in all your interviews, but this one is special because you are showcasing the new and very exciting direction our community is taking. I stand with you in following and supporting Cole in all his efforts. It is MEBO’s position to 100% support Cole’s long-term endeavors to help our whole international community.
His professional TMAYOU site is precisely what sufferers need because it teaches people about TMAU. The whole MEBO community looks forward with great enthusiasm to his direction in the years to come. He tells us,
"...that's quite rare for a disease to have two significant things contributing to it [bacterial and genetics] so scientists and doctors are interested in it…" Cole…eventually I've got big plans eventually, I want people to get involved I want everyone in the TMAU community to contribute to it, get involved, to unite everyone like a science-led TMAU group.
Also, MEBO is fantastic and it’s been so helpful to me, but MEBO is more like a community meeting other people with these conditions... Like I really want to put on the agenda: let’s push the science behind TMAU, let’s get scientists interested, let’s get doctors interested, and let’s try to push some change…
"I really want people's input into the website therefore like we can we can make it better for everyone that way" ColeAt my university they're all really interested in it because it's quite an interesting pathology, so the disease is quite interesting within the two halves like the bacterial part and the genetics are so that's quite rare for a disease to have two significant things contributing to it [bacterial and genetics] so scientists and doctors are interested in it…
I really want people's input into the website therefore like we can we can make it better for everyone that way...
In the past 11 years, MEBO’s the wholly volunteer staff has dedicated our attention to bringing to fruition the MEBO Mission, which is to initiate research into rare genetic metabolic diseases, particularly those resulting in systemic, difficult to control body malodor and halitosis, including, but not limited to, Trimethylaminuria TMAU. In addition, a great deal of energy has been vested by the MEBO community to offer support to people who suffer from these conditions around the world.
MEBO's Mission
MEBO's Mission is to initiate research into rare genetic metabolic diseases, particularly those resulting in systemic, difficult to control body malodor and halitosis, including, but not limited to, Trimethylaminuria. MEBO has been involved in research studies and TMAU test program, such as:Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing
NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing
NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing
NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012
MEBO TMAU TEST PROGRAM:
* The MEBO TMAU Urine Test program was offered internationally from July, 2012 until June, 2017.
Additionally, MEBO focuses on bringing together the world-wide community, through local and online support groups with peer-to-peer focused communications. The MEBO Research website, blogs, and online support groups in English, Spanish, and Portuguese provide a great deal of support and information into these rare diseases to many sufferers around the world.
Throughout these years, our international community has unfortunately lacked a strong direction towards genetics simply because we have not had someone like Cole. He has centered his attention, education and career sharply on genetics and aspires to use his education and experience to guide us all moving forward in research and treatment. We are most excited and grateful to Cole for his dedication to all of us in this endeavor. MEBO supports his newly created website as one of the most valuable resource and path to follow for our community, and it’s only just begun!
About the video
In this video, Cole explains difference between testing for TMAU1 (blood tests) and TMAU2 (urine test requiring a choline load).
Cole alludes that a genetic TMAU test may come back negative because you can have different mutations in the gene which causes TMAU, but the scientist is not always looking at all of the genes that could be contributing to TMAU. They would all be TMAU1 with slightly different mutations. The more parts of the genes that are looked at, the more expensive the test is.
This is why more research is needed for authorities to work out the possible different mutations which may be having different effects as well. So, maybe one mutation means that you get really bad symptoms and one mutation means that you only get mild symptoms. Research is needed to determine which slight alterations result in TMAU1. Unfortunately, they’re not looking at the right place when testing, in part because some relevant mutations may not have even been discovered, which could result in a false negative.
Cole's approach is 2 parts:
1. Research idea: lots of people get tested and the results need to be matched to people’s symptoms
2. The clinical/hospital testing: TMAU test needs to be more accurate and higher quality test.
REGARDING DIET: Different foods affect each person differently based on their genes. “It all comes back to the genetic testing.”
María de la Torre
Founder and Executive Director
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