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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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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
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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

Thursday, July 22, 2010

Freaks and Geeks, A boy with TMAU, Episode 8

Many thanks to the producers, directors, and actors
of this episode for helping
raise social awareness of Body Odor conditions.




Young and older persons with this condition may first need to treat the paralyzing depression and anxiety that frequently prevents an affected individual from coping as well as Gordon does in this episode to then be free enough to learn the positive social techniques he applies to his every day living.

I love this video, episode 8 of Freaks and Geeks, a boy with TMAU. With proper guidance and therapy, we can learn from children who tend to accept their odor condition much better than adults. It's when we turn into young adults that we add so much emotional weight to it, but these emotions can be overcome and managed.

What I love most about this video is how Gordon copes with the whole process. Basically, Gordon goes about his business of living AS IF HE DIDN'T HAVE ODOR though he is fully cognizant of having it, and it shows when the girl he sits next to seems to be offended by his odor and gets up and changes seats with a nasty and disgusted look on her face. Yet, when the teacher announces to Sam that his lab partner will be Gordon (who has TMAU), Gordon seems to reach out to Sam by smiling and waving in a friendly manner and calling him over to sit by him. Sam is actually quite rude in his reply, and Gordon seems hurt by it.

Being open minded, Gordon knows why Sam rejects him, though he realizes it's not all clear cut black and white, as shown later in the episode.


Gordon seeks to keep on living perceiving the multiple dimensions of his social life not only his odor. With this approach, someone nice like Sam would also see the real person behind the odor.
When they are studying in Sam's room, Gordon points out to Sam that he understands the reason Sam didn’t want to study with him - and points out that Sam would rather study with Cindy because he likes Cindy. He then proceeds to establish a good friendship with Sam by talking about how to establish a good relationship with Cindy. In other words, he overcame the natural boundaries the odor created by being ‘real’ and being a good friend. Eventually, Sam is sitting on the same bed face-to-face with him at close range listening intently, as if the odor was non-existent.


PEOPLE DO ACCLIMATE TO ODOR, MAKING IT MORE TOLERABLE,AND EVEN UNNOTICED ONCE EMOTIONALLY INVOLVED IN A RELATIONSHIP WITH A SUFFERER.
I know this is possible because I have observed in the 4 main meetups I've attended how some sufferers tend to cautiously approach their social life in a similar manner. My own son approached his problem in a similarly to Gordon's most of his life, but more significantly from his high school Freshman year (when his intense odor kicked in) through his BA in college (when he controlled it with the TMAU protocol), and he's managed to maintain his friendships throughout that time to the present.

There is life beyond one’s odor, and there are many more reasons (other than or in addition to the odor) for people behaving as they do. Not everything in life is solely related to odor. Deep down inside, Gordon and Sam know that it was due to both reasons, Cindy and the odor, but Gordon chooses to discuss Cindy as the culprit in an effort to establish a friendship and look beyond his odor. That is an excellent way of socially coping with one’s odor condition. As most sufferers do, Gordon understands and empathizes with others for having difficulty coping with his odor, but LIFE GOES ON, and he strives to live it.

Gordon seeks to keep on living a full life by perceiving the multiple dimensions of his social life and not only his odor.

With this approach, eventually, someone nice like Sam would hopefully also see the real person behind the odor. If Gordon had never taken this approach to his social life, he would never have found a friendship as he did with Sam. Eventually, Sam tells his other two friends that Gordon is “really cool”.

This is what psychotherapy should be all about when a sufferer seeks mental health therapy – HOW TO COPE WITH THE ODOR in order to become as social as possible, and how to learn to look beyond the odor and to help others look beyond the odor as well in order to live life as fully as possible. Gordon seems to have it down to a science.

ORS type of therapy does NOT address the real issue of how to cope with one’s reality. If indeed one’s odor isn’t intense enough for most in society to detect it (only some do), then eventually as the sufferer becomes more sociable, the 'odor issue' will eventually take second place and practically dissolve on its own through the socialization process. However, one must first need to treat the paralyzing depression and anxiety that frequently prevents an affected individual to cope as well as Gordon does in this episode.

As he tries to help his new friend with deodorant as a solution, Sam is beating around the bush trying to talk about smells referring to Cindy smelling “great, must be the shampoo or deodorant or somethin”. Then musters up some courage and more directly bring up the subject to Gordon by asking, “What kind of deodorant do you use?”, Gordon turns to him and just brings up the topic about his odor and TMAU, saying, “I know I smell, Sam…” as if he has already come to terms with it.

...how can we expect society to cope with our odor unless we learn to cope with it ourselves?
Sam then seems to panic and become overwhelmed with this, AS MOST FAMILY AND FRIENDS DO, and acts as if he has no clue about what Gordon is talking about, HAHAHA!!! Odor is such an emotional / social issue!!! So, how can we expect society to cope with our odor unless we learn to cope with it ourselves?

I sometimes wonder if family and friends tend to acclimate very quickly in part due to their psychological need to do so because they can't bear the thought of a loved one having this condition. Perhaps, eventually, they become convinced that the odor just doesn't exist!

Eventually, Sam invites him to the movies, Gordon seems happy about it, says, “OK, I’ll try to not stink up the joint…Just kidding” and they both laugh.

It is up to the sufferer to first cope with his or her odor, so that others in society can learn from the sufferer! Gordon shows us how to do this.


Perhaps we can learn from children???


Young and older persons with this condition may first need to treat the paralyzing depression and anxiety that frequently prevents an affected individual from coping as well as Gordon does in this episode to then be free enough to learn the positive social techniques Gordon applies to his every day living.


We must unite, fund raise, seek grants, promote social awareness and pursue research for treatment and a cure. We owe it to ourselves and to our children!

Gordon seems resigned to having this problem, but feels there's hope for a cure in the future. This is where we come in as a community of sufferers. WE MUST UNITE, FUND RAISE, SEEK GRANTS, PROMOTE SOCIAL AWARENESS AND PURSUE RESEARCH FOR TREATMENT AND A CURE. We owe it to ourselves and to our children!


María de la Torre
President and Chief Executive Officer

www.meboresearch.org
maria.delatorre@meboresearch.org


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