Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

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

Thursday, April 10, 2008

Intro letter

MEBO RESEARCH FOUNDER
AND EXECUTIVE DIRECTOR

As a 54 year-old married mom with two sons living in Miami, Florida, I have personally struggled with severe body odor in my family throughout my life, and especially these past eight years, the odor has been impossible to control. The most exasperating aspect of the struggle to control and cure this condition was not finding answers from numerous well-intentioned medical doctors, including gastroenterologist, dermatologist, allergy and asthma specialist, and othorhinolaryngologist. As a result, I had no other recourse but to turn to the web to find guidance and answers.

After having read numerous research articles online from around the world, heart-wrenching posts by body odor sufferers in many Body Odor/TMAU forums, and after watching various news and talk shows regarding this matter, it seems to me that most cases don’t fit the traditional idea of body odor as being an external skin problem. By that I mean that it is bloodborne and systemic, to be released through the pores and any way it can through all the body cleansing organs - lungs, kidneys, skin, and glands. I am also amazed at the number of sufferers posting on the online boards. It seems as if it is far from a rare problem, although it seems to vary in degree of intensity.

I began to see a pattern emerging in numerous parts of the world suggesting that body odor is a medical condition that usually arises from more than one cause in each individual sufferer, such as metabolic and/or gut bacterial imbalance, triggered by physical and emotional stress and hormonal changes, and possibly other causes yet to be discovered, many of which are genetic in nature. These multiple causes in one individual sufferer may vary from another sufferer, thus making it extremely difficult if not impossible for sufferers to find a lasting solution to their respective body odor condition without additional research and professional guidance.

The function of this blog is multifaceted as it serves as a channel between experts and sufferers to promote awareness and funding for research, and to achieve a good solution to enable sufferers to help themselves. First and foremost, I would like all sufferers who visit and participate in this blog to be assured that I commit to doing everything in my power to protect your privacy and confidentiality throughout this process. And experts, this blog will serve as a tool for you to tap into an international pool of sufferers who are very eager to assist you in finding a good understanding of the various causes of body odor and a solution to our problem; so please feel free to get in touch with me at any time, maria.delatorre@meboresearch.org, and I will do everything possible to assist you regarding this matter.


SUFFERERS UNITED

Through this blog sufferers of various body odor forums, as well as other sufferers, can come together in larger numbers to provide the scientific community with data for research, surveys and questionnaires. In turn, sufferers can find in this blog, online articles of scientific and medical information related to body odor and its management. In this manner, I hope that sufferers and experts unite and arrive at a better understanding of the various causes of body odor, develop an effective course of treatment for each condition, and most importantly, find a cure.

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. It saddens me that people can be suffering so much misery, with the medical world seemingly unaware except for perhaps a handful of experts who know about trimethylaminuria. It is also my aim that all private and group health insurance plans as well as national medical plans routinely cover the diagnosis and treatment expense of these conditions as it would any other medical condition so that bloodborne body odor sufferers can afford to seek proper medical treatment.

I therefore invite all members of all body odor forums and websites, and all who suffer from body odor, family and friends, and the scientific, medical, and healthcare community throughout the world to unite and to participate in this endeavor to find real answers. Sufferers may do so by providing as much accurate data as possible to whatever questionnaire or survey researchers post in this blog to assist with their research, while feeling confident that their privacy will be protected. Researcher should feel welcomed with open arms to carry out their research projects in this endeavor tapping into a strong pool of available subjects in a joint effort to find a cure for body odor. In this data and information exchange effort, we can unite at an international level to achieve all these goals so that we can provide a happy and productive life for ourselves, our children, and future generations.
María

María de la Torre
Founder and Executive Director

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



SUPPORT THE MEBO MISSION: 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.


Please use your credit card to make your donation to MEBO.


Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner


A EURORDIS and NORD Member Organization

0 comments:

Post a Comment