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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

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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

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to join : go to
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BO Sufferers Podcasts

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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
rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Sunday, June 10, 2018

Donations "Gut Microbiota in Idiopathic Malodor Production" Research


Please donate to support international shipping of samples for the MEBO "Dynamics of the Gut Microbiota in Idiopathic Malodor Production" research study funded by a uBiome Research Grant awarded to MEBO Research in June 2018. "This is a great research grant that has the potential to have a lasting, significant impact on the lives of sufferers !

This is NOT a TMAU test, or at all limited to TMAU. This study is focused on ALL odor conditions and PATM that may stem from, or be significantly influenced by what we eat, the environment in which we live that we touch and then touch our food and mouths, and the water we drink.
The primary aim of this research is to provide MEBO'S Scientific Director, Irene Gabashvili, PhD., with very valuable information, and and with assistance from uBiome scientists, to analyze what role gut microbiota has in idiopathic odor and PATM conditions. With greater understanding of the role of gut microbiota, it is hoped that targeted, precision protocols could be developed for the different conditions. Irene and uBiome will then publish their findings in professional journals so that all professionals in the scientific and medical fields will have access to the research findings.  The ultimate aim is so that when a sufferer visits his or her physician with odor/PATM symptoms, proper diagnostic tests are performed resulting in precise medicine treatment. As I noted in my Introductory Letter in this Blog on April 10, 2008,


It is my sincere wish that the outcome of this effort will result in a future commonplace practice of a sufferer going to his or her family doctor anywhere in the world presenting with body odor as his or her primary complaint, that the physician would immediately know what metabolic and/or microbial diagnostic exams are indicated in order to arrive at a speedy diagnosis and treatment plan to control and eliminate body odor.


This grant does not cover international shipping cost of kits and samples. Comparing samples from different countries allow for a greater understanding of diet, environment, which sufferers touch and then touch their food and mouths, and possibly different water treatment. Your contribution will make an impact, whether you donate $5 or $500. Every little bit helps.

Most of us can donate at least $5 a month for this amazing research opportunity.
I totally 100% understand that most sufferers are either unemployed or underemployed. By underemployed I mean find it almost impossible to work in their chosen career due to their condition. It also means that due to the consequences of the condition, current employment is threatened because sufferers may be the first to be laid off from their jobs and that donations are a sacrifice.  It is with everyone's contribution  that we will be able to achieve the MEBO Mission.

I want to thank those who have already donate. Some sufferers donate their time and work to raise awareness by participating in email campaign, Podcasts, and RareDisease Day that MEBO Directors volunteer to spearhead, and others volunteer their time contact universities, hospitals, and laboratories in their community/country pursuing research and testing. And others volunteer their personal test results to our experts for research. We are all volunteers in MEBO, and each in his or her own way. We just need to ask ourselves HOW we can contribute, and not whether we will contribute at all. Together, we can make a huge difference for ourselves and future generations!

Most of us can donate at least $5 a month for this amazing research opportunity.

This is NOT a TMAU test, or at all limited to TMAU. This study is focused on ALL odor conditions and PATM that may stem from, or be significantly influenced by what we eat, the environment in which we live that we touch and then touch our food and mouths, and the water we drink. MEBO has always been very cognizant and focused on the fact that 70% of sufferers who do the test get negative results for TMAU. For this very reason, MEBO continues to pursue research opportunities to discover, identify, and classify new odor/PATM conditions. Only then can targeted treatment be developed - even with diet alone (hopefully).

At this time, the 70% who get negative results for TMAU and whose doctors can't figure out the cause of their odor condition, have to focus all their attention on cleansing out of their bodies all the odorous chemicals. Then come the huge guessing game - diet and supplements. This research addresses the guessing game by seeking to identify the cause of each individual odor/PATM condition to develop targeted protocols.

Thank you for your support. I've included information about Mebo Research Inc. below.

MEBO Research is a sufferer-founded Public Charity in the United States since April 21, 2010, under section 501(c)(3) of the Internal Revenue Code, and a patient advocacy international campaign to research systemic body odor and halitosis. Contributions to MEBO are deductible under section 170 of the Code. The Charity is qualified to receive tax deductible bequests, devises, transfers or gifts under section 2055, 2106 or 2522 of the code.

MEBO Research is also registered in England and Wales as a Not For Profit, Limited by Guarantee Company (2009). MEBO is a NORD and EURORDIS Organization Member and its directors are moderators of the Trimethylaminuria Community at RareConnect.org. MEBO is referenced as an Advocacy and Support Organization in websites like the Genetic Alliance and Orphanet. MEBO is the impacted group for the MRC Research Grant of £360,684, as noted in the 'Outcomes' Tab of the Gateway to Research, Research Councils UK site.

https://rarediseases.org/organizations/mebo-research-inc/

https://www.eurordis.org/sites/default/files/members.pdf

https://rareconnect.org/en

https://www.orpha.net/consor/cgi-bin/SupportGroup_Search.php?lng=EN&data_id=94333&title=MEBO-Research--England-and-Wales-


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

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