Kelly made a video about TMAU for the Barcroft TV Youtube Channel this year.
Barcroft TV started as an independent content creator for UK TV Channels, but now also has one of the most watched 'professional' Youtube Channels.
Kelly's original TMAU story video for Barcroft appeared on their youtube channel on February 2017.
Knowing the media 'hype' channels, it also got a lot of media exposure at the time, including a personal appearance on the mainstream ITV TV mid-morning show.
Video Stats :
Video uploaded to Barcroft youtube channel in Feb 2017.
Current views : ~2.6 million views.
Nov 17 weekly view trend : Around 300k a week.
Posted on 'Born Different' Facebook Channel.
Dec 19 2017.
2.6 million views in 10 days.
Looks to be most popular 'born different' video recently. Facebook TMAU video
There are videos on the Barcroft channel with many more views (17 million) but at this rate it's looking like this TMAU video may have a chance of reaching their top 50 videos.
The ITV video also has around 320k views and steadily growing.
Kelly's video must be the most watched TMAU video ever, and possibly the main way that the public currently hear about TMAU.
We are all forever grateful to Kelly, as TMAU is still in the 'dark ages' with regards public awareness and interest for finding therapies, treatments, cures.
Kelly's TMAU Youtube Channel
Kelly has also recently started her own 'TMAU' channel.
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.
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.
Saying it like it is. Note about the video :
This is an embed of the original, not a copy.
If this original is deleted or 'sharing' is disabled, it will auto-delete here too.
Comment
Most people report of metabolic fecal/fart smells.
Currently trimethylamine is the only metabolite tested, so the only metabolite test on offer.
People with systemic malodors identify with the TMAU concept, but not the 'smell'.
There still seems a lot to discover about the 'systemic/metabolic malodor' syndrome.
Personally I think for most cases they have identified the correct enzyme but have limited it to one metabolite that may be a 'small player'.
Excerpt from 2007 UK documentary "Help I smell of Fish" about trimethylaminuria.
The story of Thomas, who is about 9 in the docu.
Comment on the story :
1. The consultant smells him. This is unusual for someone with a trimethylaminuria (TMAU) diagnosis. It seems that most are so transient that usually a health professional never smells them.
2. His friend says sometimes he can smell something fishy on his breath. This is of interest as many feel they only have a 'metabolic halitosis' problem, and not body odor. This seems to be evidence that this can happen, although it seems he also often smells of body odor too.
3. He has a 'fishy' odor. This is the supposed textbook smell of 'TMAU' but most report of smelling of feces, flatulence, sewage etc. A guess would be they are prone to smelling of all FMO3 substrates, especially those generated by gut flora. Perhaps the smell of fish is a sign of a 'severe' case. The consultant says he can smell the fish odor' this time'. Perhaps this means he has smelt other smells.
Thank you to Thomas and his family for taking part in the documentary, as well as the 2 ladies who took part.
TMAU activist Cassie appeared on UK TV program Medical Mysteries last Thursday (March 2016) to raise awareness of trimethylaminuria (TMAU).
This blog uploaded a copy of the video to our Youtube Channel.
Regular readers will be aware it got a quick surge of views (around 2600) in 3 days. Below is the info I have on the stats of the youtube video and the TV show itself.
1. The TV show itself got around 0.9 million viewers on first showing. This is probably average for Channel 5 UK in that timeslot. It will also be repeated quite often in the next few days/weeks. It's a fair showing, though TMAU has appeared on UK shows with around 4 million. Despite this , it still seems probably 99% unknown in the UK. I reckon probably a public ad campaign will be needed to penetrate the public conscious about TMAU.
2. There doesn't seem much new activity on the TMAU forums after the program, such as rareconnect and tmau.org. I thought there would be some new posters but it seems not.
Youtube channel stats on Cassie TMAU video :
1. At first there was a huge surge for 2 to 3 days almost immediately (2,600 views in 48 hours), but now it has tailed away to around 40 views a day. I now know this surge was due to the video being embedded on Romanian news website Kanal D Romania : TMAU on Kanal D
This made up around 95% of the first 2 day views.
2. The video is blocked in the UK due to copyright restrictions. This means no-one in UK can watch it and it won't show up in UK google searches. But it is viewable everywhere else it seems, and my channel copyright status is 'good', which means the copyright owners are allowing it to be viewed outside UK. I presume there is an ad on the video, with the money going to the copyright holders.
3. So far, outside of Romania there has been few viewers. Perhaps 200 or so in 5 days. Maybe a few initially were subscribers. It does not seem to be getting many clicks on e.g. google search, but I am hopeful this will grow. I thought it may be able to go viral but this now seems not the case. May now be the same as previous videos and 'preaching to the converted' or those very worried about an odor, but not reaching the general public. We will see.
So thanks again to Cassie for putting herself forward to appear on TV about probably the most embarrassing condition. It is something 99%+ of us would not do. And who knows how many people it will help, as well as the passive benefit of people being able to view the video on youtube for foreseeable future.
My random suggestions for TMAU / Systemic Body Odor campaigns :
Ads that reach the public :
e.g. a bus ad (1) via London (£900 for a month ?) , New York.
e.g. a TV ad. On lesser programs these can be relatively cheap but need to make ad etc. Much dearer than bus ad.
e.g. Stationary public place ad. Not so keen on this in case it's defaced.
Awareness campaign to Dr's surgeries
I had a look for a list of surgery Dr emails but could not find one other than paid for mailing lists.
Apply to shows / magazines / newspapers that have high profile.
My view on TMAU :
Personally I think if someone smells metabolically, then an enzyme is at fault and they may smell of any substrate that enzyme neutralises. In the case of FMO3 this is many sulfides, amines, and phophines. Through a quirk of fate someone with a fish smell was tested for TMA 46 years ago, and since then no-one has researched the concept of sysbo since then. So TMAU is the 'only peg' we have to hang the concept of sysbo on, so I see it as a trojan horse to raise awareness about systemic body odor.
Cassie's TMAU story was on UK TV Channel 5.
Program title : Medical Mysteries, The woman who smells of fish.
Aired March 2016.
The video (youtube) can be seen below
Note : due to copyright, this copy is blocked for UK viewers. Update : Video now seems to be viewable in UK.
UK viewers, you can watch video copy on Daily Motion
My comment :
Cassie done a great job on the show. The TMAU story was only about 8 minutes of a 50 minute program, but a few things make me think 'TMAU' may be a 'seller' when it comes to these types of programs ('weird' health disorders):
1. It was the first show of a new program and they named it 'the woman who smells of fish'
2. The production company 'Tigress productions' have done a TMAU documentary before and may have got a lot of feedback previously.
3. The program was mostly about the other 2 stories (20 minutes each ?) but was named about 'smelling of fish'. So even though it seemed to have last priority it was used as the 'bait'.
4. My understanding is that 'woman who smells of fish' was trending on twitter UK in some areas when it was aired.
5. The show got a reasonably 'peak viewing' time (Thursday 8pm)
Dr Lachmann appeared on the show (as producers tend to go for him as the 'health professional expert', partly since there are so few I guess) and made some good points :
1. Most do not smell when seeing him. He said it was because they probably already do a lot of stuff to avoid smelling but imho it's because most of us are naturally very 'transient'.
2. Most complain of fecal and garbage smells. I guess he said this due to it being by far the most common complaint. IMHO it's because they will smell of many sulfides and amines oxidized by FMO3, but at the moment no expert would be prepared to say that or maybe even believe it.
3. One or 2 visit him a week. I presume he means new referrals (?) but maybe not. And this is only the ones in the area eligible to visit him, as well as taking the time to find out about him and follow it up via their GP.
He made a few other points such as 'it's rare' (which I don't agree with) and Drs mostly know nothing about it (true).
Video has 2,600 views in 1 day
I uploaded the video yesterday and despite being blocked in UK it has had 2,600 views in 24 hours. My best video before this was Claire's video which has 75k views since 2010. For some reason it seems to have caught on in a way the other videos haven't, seemingly to a wider audience (relatively). Currently I don't know where the main sources of the traffic is coming from. I wouldn't say it's went 'viral' but it's getting a good steady flow of viewers (will keep you updated).
So thanks to Cassie for doing the show. It's looking like it will be a great source to raise awareness of TMAU which is very much needed.
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
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.
Another young lady has posted a video talking about living with TMAU. This greatly raises awareness, Thanks to all the people who post videos on the subject.
This is an embed of the video. Should the original be deleted this one will auto-delete too.
Barcroft TV has a history of TMAU stories for TV. Examples :
