Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out
March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

Blog Archive

MEBO Research Clinical Trials

Sunday, July 19, 2020

MEBO Supports TMAYOU website & Mission

Subscribe to Daniel's youtube channel to get notifications 



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.

"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…" Cole
As previously noted in the MEBO Blog post, ‘TMAYOU video: sign up for newsletter’, Cole has created a new TMAYOU website and TMAUYOU YouTube Channel. Cole is a recent graduate with an undergraduate degree in Genetics who also sufferers from the genetic form of TMAU. As he tells us in his video, he has concentrated his studies on genetic research and clinical treatment as he aims to become a medical doctor as well.

"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." Cole
Cole has created a TMAYOU website as a platform that strives to focus on being factual and scientific for people with TMAU and other body odor conditions. It is aimed at connecting with the scientific and medical fields, including students to raise awareness and to promote research and targeted therapies. Everything on his website is also recommended by the UK National Health System (NHS). He tells us, “I want it to be a professional website you can just get professional and accurate information, which will keep people safe and also improve their symptoms…”

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" Cole
At 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

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)



Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

get New Posts by EMAIL : Enter your email address :



A EURORDIS and NORD Member Organization

0 comments:

Post a Comment