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'.
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.
Recent video on youtube.
A general overview of the genetics of FMO3 enzyme.
I think by a member of the public.
Below is an embed of the video.
If the original is deleted this copy will auto-delete.
My comments :
The person has done a good job. I agree with the terminology they use. I think it probably best to discuss FMO3 mutations/variants in that terminology (e.g. E158K, E308G etc)
FMO3 enzyme is a 532 amino acid coding sequence
Think of it as a train track or ladder. You need both sides to make up the amino acid.
Each 'rung' is called a codon
So FMO3 gene has 532 codons (coding sequence)
I agree with what is said in the video, but I would go further and say some' carriers' are probably 'transient sympotmatics' too. In fact I think most probably fit this category.
What I am saying is, at the moment the consensus is that there are sufferers and carriers. I'm saying that some carriers will in fact be sufferers, and the genetic spectrum will go from 'severe' to 'mild' much further than experts currently suggest. This would drag maybe more into the 'danger zone' at times.
For example, e158k and e308g are very common variants, thought to be harmless. I reckon perhaps in tandem with other variants, or in homozygous form (e.g. e158k / e158k), the person may at times fall into the 'danger zone'. Also many will be 'compound heterozygotes'.
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.
A brave young USA lady has begun a vlog on Youtube to raise awareness of TMAU. The youtube username is StankGirlDiaries. So far 2 videos have been posted, which are valuable insights as to how TMAU has a profound effect on the lives of sufferers. Thank you StankGirlDiaries, for the creative and articulate videos. You can subscribe to her channel to keep updated of new videos.
TMAU webinar June 2015
Hosted by : Rob at rareconnect.org
Guest speaker : Jake Wintermute PhD
Webinar title : Synthetic Biology and Microbiome Engineering approaches for Trimethylaminuria
My understanding of this subject :
It could leads to a 'FMO cream' that is currently theorized as being based on genetically modified harmless skin organism rich in FMO that would oxidize TMA and other FMO substrates on touch.
The end product could be cheap and easy to manufacture but it may take millions to develop
A funder would need to be found for such a project (probably a pharma company)
As FMO needs oxygen to thrive, currently it is thought it could only realistically be a skin cream and not a 'probiotic' that could be taken orally as the gut is mostly a very 'oxygen deprived' area.
Other speculative thoughts :
Perhaps it would not need to be a 'probiotic' cream but rather just a FMO rich cream or some other oxidizer that is capable of oxidizing FMO3 substrates. FMO3 substrates can be oxidized by other metabolic pathways (not usually in humans).
It would probably not have to be specifically FMO3 enzyme, but merely a FMO enzyme (there are are 6 types of FMO enzymes known : FMO1 - FMO6). FMO's hopefully have a broad overlap in function in this situation.
The perfect scenario would be some sort of pill that oxidizes FMO3 substrates in the gut.
It is a very exciting potential therapy. Lets hope we can get the project going.
