Youtube : UK lady with TMAU, workmates smell her

A professional UK video production (Barcroft TV).
Only lasts 6 minutes.
UK Lady with diagnosed TMAU.
Her workmates can smell her.
Barcroft TV have done TMAU videos before.

Full TMAU story in Daily Mail

This video was just published on the Barcroft TV youtube channel. My impression was that Barcroft usually did productions for TV and later put them on their youtube, but this one is only 6 minutes long and I have not heard of it on TV. Perhaps it was on TV as part of a mix of health disorders.



Barcroft TV has a history of TMAU stories for TV. Examples :
'Help I smell of fish' documentary. (youtube)
2016 video of young London lady for Channel 5 'health-disorder' programme (click for youtube video)

Barcroft
It seems they have 2.5 million youtube subscribers, so any video on there gets a lot of exposure. Barcroft is a small UK production team originally set up to provide TV channels with programs. Perhaps now they are also specialising in short stories for their youtube channel too.
Barcroft story 2016
2014 news article

Comments on this video :

A workmate can smell her.
One workmate says they can smell her. and have had complaints. This is good 'witness' evidence as usually in the videos (or in any platform) no-one reports of smelling them. It shows how for example, a TMAU person may struggle in a workplace. Despite TMAU, she is married and working, though she seems to have picked nightshift to avoid people.

Not aware of  this lady.
I am not aware of this lady on the various TMAU online social hubs (e.g. forums etc). It goes to show that there are more out there we never hear of. Personally I think 'systemic malodor syndrome' could be perhaps 1-4% of any population.

Many thanks for the publicity to the disorder. She joins the TMAU 'Hall of Heroes'.

Current stats (day 2 of the video upload, 20 Feb 2017)
220k views.
Barcroft has 2.6 million subscribers.
5th most read story over last 30 days in Daily Mail Health Section (could go higher).
2nd most read Health Section story in Daily Mail over 7 days (could go higher).
322 Daily Mail comments.
9.4k Daily Mail shares.

Other links :
IBTimes article
   

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By sysbodyodor

media, personal stories, raising awareness, tmau, TMAU personal stories videos, trimethylaminuria, video, youtube

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Young Mom TMAU Youtuber

This young American mom has started a youtube channel about TMAU.
Looks like she plans to update the channel quite regular.

Note : This video is an embed from source.

If video is deleted it will auto delete here too.

As TMAU is so taboo, quite often people delete videos in hindsight.

Visit her channel here : click link 

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By sysbodyodor

Body Odor, community, media, personal stories, personal treatment, systemic body odor, systemic malodor syndrome, tmau, TMAU personal stories videos, video, videos, youtube

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New TMAU Youtuber

A young man who identifies with TMAU has uploaded a testimonial video to youtube. This is an embed of the video. If the original is deleted it will auto-delete here too

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By sysbodyodor

media, personal stories, TMAU personal stories videos, video, youtube

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TMAU Youtubers

Recently there has been an increase in 'TMAU Youtubers', which all sufferers are grateful for as it raises awareness and brings comfort. Metabolic Malodor is a very 'taboo' subject, which is why it is so unknown. TMAU is the only test on offer for the concept of  'metabolic malodor', so many who feel they have a metabolic malodor disorder identify with TMAU. My own belief is that most cases may be more to do with all 'FMO3 substrates' (many sulfides and amines) rather than just trimethylamine, but TMAU is the only test on offer currently.

This is a new TMAU Youtuber. This is an embed of their video. If they delete their videos it will auto-delete here too. You can subscribe to her channel for updates.

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By sysbodyodor

Body Odor, media, metabolic malodor, personal stories, raising awareness, systemic body odor, systemic malodor syndrome, TMAU personal stories videos, video, youtube

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TMAU webinar : Monday 8 June 6pm Paris time

rareconnect.org webinar

Monday 8 June

6pm Paris time

Webinar title :

Synthetic Biology and Microbiome Engineering approaches for Trimethylaminuria (TMAU)

Guest Speaker :

Jake Wintermute, Ph.D.

Postdoctoral Researcher

Paris Descartes University

in the rareconnect.org Webinar Room : click here
to check your local time : google '6pm Paris time'

Jake is a biologist at the Centre de Recherches Interdisciplinaires in Paris. In the summer of 2014, Jake challenged a team of undergraduates to use genetic engineering to improve human health and well being. The result was "The Smell of Us," a collection of new biotechnologies to control body odors by engineering the bacteria that live on human skin. The team's work was awarded prizes for "Best New Application" and "Best Art and Design" in an international genetic engineering competition can be seen online (http://2014.igem.org/Team:Paris_Bettencourt).

In this webinar, Jake will discuss his group's work-in-progress on TMAU. The primary pathology of TMAU is the appearance of trimethylamine (TMA) in the sweat. Many microbes are capable of metabolically neutralizing TMA, including some that occur naturally on human skin. Genetic modification may enhance this ability, creating microbial products to attenuate the symptoms of TMAU. Jake will discuss his scientific progress and the specific challenges of developing a genetically modified organism for human use.

Link : TMAU project for IGEM 2014 

Webinar will be free and recorded

rareconnect.org Webinar Room

My own comment :

This is a realistic potential therapy for 'FMO3 malodor' on the skin. It would be better if it could result in 'internal solutions' such as a probiotic that would oxidize FMO3 substrates before being absorbed into the bloodstream, but because the microbe need an oxygen rich environment they would not survive in the gut. But who knows, maybe one day. So skin products with these microbes is a decent 'bandaid' and supposedly cheap and easy to make. Unfortunately it needs lots of funding to create such a product, as no doubt Jake will explain. It should be a great webinar. Don't miss it (but it will be recorded and put on youtube).

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By sysbodyodor

announcement, join in, media, possible future therapy, tmau, TMAU research, webinar, webinar announcement

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'The Boy Who Smells Like Fish' now available to stream

The TMAU movie 'The Boy Who Smells Like Fish' released in 2013 has now been re titled and re-marketed as 'Treading Water'.

It will screened in some USA cities this week (March 13th 2015)

It is also now available to watch via most major movie streaming sites (eg iTunes, Amazon, Google Play, Cable, Satellite, Xbox, PlayStation and VUDU)

Itunes link       

Amazon : link      

Google Play : link

check for availability with other streaming sites

Cinema screeniungs
The retitled movie (now 'Treading Water') will be shown at the following USA cinemas from 13th March

Cinema Village (New York, NY)

Laemmle Music Hall (Los Angeles, CA)

PFS Roxy (Philadelphia, PA)

Plaza Theatre (Atlanta, GA)

Harkins Shea 14 (Phoenix, AZ )

Harkins Northfield (Denver, CO)

4-Star Theater (San Francisco, CA)

Studio Movie Grill (Dallas, TX)

Sundance Cinema (Houston, TX)

Sundance Cinema (Seattle, WA)

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By sysbodyodor

announcement, media, raising awareness, tmau

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BORC recorded call with London TMAU nutritionist

Body Odor Resource Center

Thanks to Lisa of the Body Odor Resource Center for arranging another great phone conference call for the trimethylaminuria (TMAU) community today.

This time the guest was :
Kit Kaalund Hansen of the Metabolic Kitchen London

You can listen to the call and previous conference calls on the BORC website
listen to BORC recorded conference calls

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By sysbodyodor

media, metabolic malodor patient advocacy, raising awareness, webinar

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Young lady TMAU essay for Rare Disease Day Flickr project

# I’mNotTrash-TMAU

A young lady has written an essay about living with trimethylaminuria (TMAU) for a Rare Disease Day project on Flickr created by rareconnect.org. The image that goes with the story is striking and thought provoking. Perhaps others can also create images that get across points about malodor quickly to the public, such as TMAU or other systemic body odor or halitosis conditions. You can read her article on the Flickr website.

 Click on the image to read the article on Flickr

My comment on the image :
I am very impressed with the message of the image, as the words capture the point very well that most people suffer from a wide spectrum of malodors. Personally I think most people with 'fecal body odor' probably have an issue with all FMO3 substrates, most likely due to a weakness in FMO3 function of some sort. FMO3 oxidizes many of the malodorous sulfides and amines generated in humans. I may try to create my own 'campaign banner' to get across this message. These sort of images could play a role in raising awareness of systemic malodor syndromes I think.

The image would make a good billboard poster or bus poster for an awareness campaign

Link to the article : TMAU testimony on Flickr Rare Disease Project
Link : Her Facebook TMAU Campaign Page

Link : rareconnect.org TMAU group
Link : Rare Disease Day

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By sysbodyodor

fund raising, join in, media, personal stories, raising awareness

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Idea : Billboard advertising campaign to raise awareness

Very few of the public are aware of the concept of metabolic malodors such as TMAU. Awareness would instigate research and sympathy.  Also in my opinion maybe 1% of the population may suffer from 'intermittent fecal body odor/TMAU' (which I currently believe to be FMO3 substrate malodor')

Question : How can the metabolic malodor community raise awareness ?
Idea : Billboard campaigns funded by crowdfunding

For instance a New York subway billboard campaign for a week might cost maybe $1000 (random guess). This could be crowfunded by the community via sites such as Indiegogo..

Possible advertising locations :
Major cities (e.g. New York)
Subway ad, Bus ad etc

Possible ad campaigns :
My suggestion would be to make it around TMAU or metabolic malodor in general
I would suggest mentioning a website to give those interested somewhere to go online
Random example : 'Fecal Body Odor ? It could be metabolic. Visit www ... etc'

How are location ad campaigns done ?
Usually via ad agencies

In summary 
Crowdfund for a location ad campaign (say $1000)
Put a billboard ad in a major city

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By sysbodyodor

fecal body odor, fund raising, media, raising awareness

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Young UK TMAU lady on Irish Radio

Cassie is a young British lady looking to raise awareness of trimethylaminuria (TMAU) as it is a disorder that the public and health professionals are unaware of. Here she helps all sufferers by appearing on an Irish Radio show to discuss her TMAU. The interview was on the popular nid-morning Tubridy show on Irish national radio station RTE2FM. Such media appearances have a big impact on raising awareness. Most times the person appearing says they heard of the disorder from a previous media appearance.

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By sysbodyodor

media, metabolic malodor patient advocacy, personal stories, raising awareness, systemic body odor, systemic malodor syndrome, tmau, video, youtube

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Young British lady raises awareness of TMAU in the media

A young lady from London has appeared in the UK media this week to raise awareness of trimethylaminuria (TMAU) by talking about her own TMAU. Cassie is 22 and is a budding Jazz musician and singer. She is also a psychology student. Her official facebook page mentions her singing style and voice being compared to Amy Winehouse.

Her article for the article about her TMAU has appeared on a number of news sites worldwide, including one of the biggest online news sites, the Daily Mail online. Cassie talks TMAU in the Daily Mail

Cassie mentions that she heard of TMAU on a radio interview, which may have been one of Ellie's interviews earlier this year.

Thank you to Cassie for being a brave pioneer in raising awareness of TMAU.  The first step to understanding, treatment and research of metabolic malodors is first for the public to become aware of the condition. Currently nothing is done as mewtabolic malodors are not known of apart from TMAU, of which only a handful of health experts have ever had an interest and usually have no funding or other things to do.

Other links related to Cassie :
Cassie Graves official Facebook page
Cassie Graves Twitter page
Cassie Graves Youtube channel
Cassie Graves official website

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By sysbodyodor

media, raising awareness, systemic body odor, systemic malodor syndrome

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Ellie interviewed about TMAU in UK media

Ellie has been diagnosed positive for trimethylaminuria (TMAU) and this week appeared in many UK media platforms to be interviewed about her TMAU. This included newspapers, radio and TV. It was very much like a UK TMAU Awareness Week. Ellie has previously appeared on the Food Hospital TV show.

Ellie on UK mid-morning UK national TV show 'This Morning'

On BBC Radio Oxford

On BBC Radio 5live

On BBC Radio Berkshire

Ellie in the papers :
 Ellie talks about TMAU in the Daily Mail
 Ellie talks about TMAU in the Daily Star
 Ellie talks about TMAU in the Daily Mirror 

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By sysbodyodor

fecal body odor, media, metabolic malodor patient advocacy, personal stories, support, video, youtube

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Ellie raises TMAU awareness in a UK national paper

Ellie James has done much to raise awareness of trimethylaminuria (TMAU). She has done previous media items, and now has kindly and bravely volunteered for an article in the UK national newspaper, the Daily Mirror.

The article can be read here : Ellie talks about TMAU in The Daily Mirror

My view on TMAU
Personally I think TMAU may only explain 'fish malodor', as trimethylamine is said to smell of rotting fish. However the enzyme that oxidizes trimethylamine (flavin mono-oxygenase 3 (FMO3)) oxidizes 1,000's of sulfides and amines in the body, so I think 'fecal-gas-unpleasant malodors' circulating systemically in humans may be due to sulfides and amines most likely to use FMO3 as their route of oxidising. And so a  FMO3 enzyme problem (either genetic or overload or both) and raising awareness of TMAU will still be likely to benefit what may be the real disorder people with many unpleasant metabolic malodors may have, FMO3 substrate malodors.

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By sysbodyodor

fmo3, media, systemic malodor syndrome, tmau

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Lisa talking about TMAU

This is a video of Lisa talking about having TMAU. Lisa has set up a company that will promote awareness of rare disorders ( Silas Garrison Fisher, Inc ).

video : Trimethylaminuria (TMAU), a personal story

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By sysbodyodor

media, video

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