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.
MEBO’s online sites are the following:
MEBO WEBSITES:
- English: MEBO website, www.meboresearch.org
- Portugués: MEBO Research Brasil website, mebo.com.br/ (new)
- English: MEBO Blog www.meboblog.com
- Español: El Blog de MEBO http://olorcorporalyhalitosis.blogspot.com/
- 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 TorreFounder and Executive Director
A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)
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7 comments:
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...
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.......
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.
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.......
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......
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,
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......