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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

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)

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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, August 15, 2013

MEBO Online Sites

MEBO Research is Public Charity with a strong international involvement of sufferers and experts from the United States, United Kingdom, Spain, Brazil, Northern Europe and Turkey. We have sufferer membership in the following MEBO sites from six of the seven continents of the world, with the only exception being Antarctica.


All new and old members are welcomed and encouraged to present their ambitious ideas of how we can unite as an international community and to also volunteer time to carry them out. We aim to raise awareness of body odor and halitosis condition to the medical/dental and political establishments in all countries of the world, for the betterment of quality of life of all future generations that may also suffer from these conditions.


MEBO’s online sites are the following:

MEBO WEBSITES:
  1. English: MEBO website, www.meboresearch.org
  2. Portugués: MEBO Research Brasil website, mebo.com.br/ (new)
MEBO BLOGS:
  1. English: MEBO Blog www.meboblog.com
  2. Español: El Blog de MEBO http://olorcorporalyhalitosis.blogspot.com/
  3. Portugués: TMAU Brasil: mebo.com.br/ (new)

MEBO YouTube: http://www.youtube.com/user/meboresearch

MEBO Twitter Account: https://twitter.com/MeBOResearch


María de la Torre
Founder and Executive Director

  A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)





A EURORDIS and NORD Member Organization 

7 comments:

Anonymous said...

we could compose an email and send it to every doctor and dentis in our phone book, or snail mail it, all offices would gain awarness. those with means to do so could drop the letters off with receptionists.....in all the countries and states we live in we could inform alot of professionals that have never even heard of tmau, and make them aware of it...

Aug 17, 2013, 7:56:00 AM
Anonymous said...

i have no diagnosis, i can spread the word, but that does not mean anyone will believe me, monell smelled underarms are people crying woes of body odor and monell could not detect abnormal body odor in the majority of people crying about odors......Maria questioned why i said the odor is always present because the olfactory system gets saturated....so how do i know this......a diagnosis is a huge leg to stand on, please use it.......

Aug 17, 2013, 7:17:00 PM
Maria de la Torre said...

Hi Anonymous, I think you might not have understood the complete picture of what I mean by saturation. Perhaps the following post in this blog, "Do they smell me or not?" http://www.bloodbornebodyodorandhalitosis.com/2011/01/do-they-smell-me-or-not.html
can better explain the variation of odor perception by the human olfactory system. I hope this posts helps understand that just because someone says you don't smell doesn't mean that everyone else also has the same impression, any we can say with certainty that a sufferer smells continuously with the exact degree of intensity.

This post is only an explanation of why we get conflicting feedback as we rely not only on our own olfactory system and that of others, but even scientific tests indicate that our odor levels fluctuate, i.e., TMA levels, fluctuate, with hormonal changes, diet, and stress.

Sorry, there really is no clear cut answer, especially in regards to intermittent or borderline cases, which tend to have the greatest difficulty.

Aug 17, 2013, 7:30:00 PM
Anonymous said...

i understand, having a diagnosis is a huge leg to stand on, you have proof of a medical condition, not a hygiene issue so you stand a chance of being taken seriously, not made fun of with all the bad hygiene jokes.....peope with tmau diagnosis can pave the way and make it easier for the rest of us to come foward and speak out, the world might not be ready for the rest of us to speak out yet, but knowing tmau exists may open their minds to the possibility other odor issues exist too.....i think if i ask for donations i will be told to shower because i dont have a diagnosis to back me up......and most doctors DO tell me to shower with antibacterial soap daily...other doctors exam me and see for themselves i am hygenically showered and clean and groomed and they know its not a hygiene issue.....only those who exam me believe me...i thibk if i try to fundraise no one will believe me they will tell me to shower.....if everyone with a proven diagnosis stepped foward to pave the way first, then maybe the rest of us without a diagnosis will be taken more seriously......which would give us a leg to stand on too.......

Aug 17, 2013, 8:12:00 PM
Anonymous said...

when the little girl suspended from school for odor issues was on the news, the only thing people did was make fun, make jokes, judge, say take a shower, we are assumed to have gyn issues, std's, infections, poor hygiene, etc etc, you all with a diagnosis have concrete proof to say, no i have a proven medical condition....it should not be left to the minority of people, BUT you see how people respond.....how many people have tmau, there should be enough of you with a diagnosis to get started and pave the way for the rest of us without a diagnosis to be taken seriously......

Aug 18, 2013, 9:07:00 AM
Anonymous said...

i was recently out in a public crowded space where all you could smell was arm pits ever where you went, there really are some unhygenic people, who could wash up more often, use absorbent powder, and deodorant applyed more often but they do not, underarm odor that is typical can be controlled, but they dont control it, and THEY make US with uncontrollable odors look bad and have bad reputations and not be taken seriously.....you need to know how strong an advantage your medical diagnosis is........there are people who dont wash hands, use toilette paper appropriatly, change clothes appropriatly, dont brush teeth and tongue clean daily, i am not being mean, i am saying people assume we are ALL just unhygenic.......a diagnosis proves we are not,

Aug 18, 2013, 9:18:00 AM
Anonymous said...

we need to not forget each suffer informs their doctor of odor issues, we have informed hundreds of dentists and doctors already, my question is, how many believe us and help us, how many tell us to shower, how many tell us some people JUST smell, how many have made fun of us even though we are in a vulnerable place with our doctor. people may not post on the blog for fear, once something reaches the web it is there forever, for everyone to see, there has to be 50-100 people at least diagnosed with tmau.....maybe more....300 maybe.....you are minority in numbers, but still have more power than the huge number of people without a diagnosis....... going online to ask for donations for a medical condition is possible, i believe going online and saying i smell will not raise a penny........to anyone who said people without tmau need to help now......i ask you answer honestly, if you did not have odor issues and saw an online post i smell donate money to help me figure out why......how much money would YOU donate.....now if you saw i have tmau a genetic condition please donate to help me find a cure...how much would you donate.......i believe help me find a cure would raise money...but help me find out why i smell would not raise a penny, no matter how you worded it......

Aug 19, 2013, 8:55:00 AM
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