Admin Control Panel

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


March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect 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

Sunday, October 28, 2012

Body odor conditions in TV Programs and movies

The October 7th episode “Blue Bell Boy” of HBO’s Boardwalk Empire has a sub-plot regarding the bullying of a body odor sufferer by gangsters in the early 1900s. Even though this particular scene is probably fictional, this program does use a legendary personality, Al Capone (Stephen Graham) to tell this story. In real life, Al Capone’s son was born with congenital syphilis that his father had contracted years before, which left him partially deaf. In this episode of Boardwalk Empire, Al Capone’s deaf son comes home from school with bruises inflicted by other deaf kids who bully him. This bothered Capone tremendously.

In a later scene at a brothel, he was playing cards with a co-worker, Jake, and Capone tells him that he needs to wash up before coming to the brothel because he smells “like a sardine’s twat.” Jake replies that they didn’t care there (in the brothel), and left it at that.

Later in another scene, Jake is assaulted by another gang’s crony because Jake’s smell was offensive to him. When Capone later sees that Jake had been bullied as his son had been bullied, he storms out of the room while Jake is explaining that he bathes, but right after bathing the odor returns. Capone goes and kicks and beats the man who bullied Jake, and finally kills him by beating him repeatedly with a bar stool. (A very graphic and violent scene.)

What I find of significance with this very violent program is that we are seeing more and more programs that depict a character with body odor, usually smelling of fish. Some programs come right out and use the term, “trimethylaminuria” while this one only describes the symptoms and Jake’s inability to control it. There have been television programs and movies (as opposed to documentaries made by sufferers to raise awareness) like, “The Boy Who Smells Like Fish,” “Freaks and Geeks,” and "Doc Martin" in English, and in Spain, an episode in the TV series, “Doctor Mateo,” featuring the case of a young lady diagnosed with TMAU (similar to Freaks and Geeks program). I would think that there may be more programs out there that we are not aware of as well.

The only disappointing outcome of the Boardwalk Empire episode is that the critics missed the point that this is the result of a medical condition. The Baltimore Sun assumed that it was "a glandular condition of some sort,"

Out in Chicago, we get glimpse at the softer side of future titan Al Capone. His son, Sonny, who is deaf, is getting beaten up at school. His tax collector, Jake, who probably suffers from a glandular condition of some kind, gets tuned up in part because of his wicked body odor by one of Dean O'Banion's cronies.

IGN Entertainment, Inc., seems to have completely missed the part where Jake says that right after bathing, his odor returns, and interpreted his odor is the result of Jake being a,

“…a fat, hygiene-deficient pimp.”

It seems that when screenwriters wish to present a medical condition that is not as “heavy” as cancer or AIDS, but nonetheless, one that is life-destructive, they seem to be portraying body odor conditions, and they seem to present it with a defense of some sort in support of the sufferer. As sufferers, we are pleased that the topic is even mentioned at all in order to raise awareness, but when we see the lack of knowledge of the viewers and critics, we realize just how much work still lies ahead of us.

Perhaps we can brainstorm as a community, and each sufferer take the initiative to politely clarify to those who misunderstand body odor conditions what living with body odor conditions is all about, including the injustices committed against sufferers.

Each sufferer can contribute to this effort by writing comments in the respective online critiques or publications, or emailing them to explain what the malodor condition is really all about, since it appears that they have missed the point of the message intended in the movies/TV Programs. In addition, it is always very effective to express our gratitude to the screenwriters and directors who choose to tell our story. The more sufferers take the initiative to do this, the faster our condition will be better understood by the public at large.


Please donate to support MEBO's Raising Awareness Campaign, MEBO's Public Service efforts,
and MEBO's 2013 Grant-Writing Campaign.


María de la Torre
Founder and Executive Director

A Public Charity
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


Post a Comment