Systemic Body Odor Blog

News & Views on Systemic Body Odor and Halitosis such as trimethylaminuria TMAU. If you have fecal odors or bowel odors it may be metabolic/systemic

Showing posts with label video. Show all posts
Showing posts with label video. Show all posts

20 February 2017

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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12 February 2017

Youtube : Young lady talks TMAU & Fecal Body Odor


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'.  

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4 October 2016

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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30 March 2016

Update on stats of Cassie TMAU video

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.

Links :
Original blog post about Cassie video 
Blog YouTube Channel (Systemic Body Odor)
        
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.
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26 March 2016

Cassie TMAU video : Channel 5

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.          

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6 February 2016

Video on FMO3 gene

trimethylaminuria youtube
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'.

Link : my list of FMO3 532 coding sequence

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22 January 2016

5 January 2016

TMAU Youtubers

tmau youtube
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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5 December 2015

YouTube : Another young lady talks TMAU



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.

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23 November 2015

11 August 2015

4 July 2015

TMAU webinar about the potential therapy 'FMO cream'

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.
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22 June 2015

3 March 2015

20 January 2015

18 July 2014

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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17 April 2014

BORC Podcast of Dr Robin Lachmann conference

BORC (Body Odor Resource Center) has been arranging a number of conference calls with people that may be of interest to people who have trimethylaminuria (TMAU)

The most recent conference call was with Dr Robin Lachmann of the Charles Dent  Metabolic Unit in London. Dr Lachmann has a few years background in seeing TMAU patients.

A podcast of the conference call can be heard on the BORC podcast website
Dr Robin Lachmann conference call with BORC

BORC youtube channel : link

My view on TMAU
Personally I think people with a problem with their FMO3 enzyme may be prone to smelling of various sulfides and amines that are oxidized by FMO3. This would include trimethylamine but it may be a 'small player' in the number of compounds the person smells of. TMAU came about because the professionals at the time were only looking for trimethylamine. There has been no attempts to look for other compounds. However TMAU is a useful lever to rasie awareness of the concept of metabolic malodors, and trimethylamine should also  be a good biomarker of FMO3 function which I suspect is the main enzyme responsible for most cases of metabolic malodor.
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13 April 2014

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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15 September 2012

7 April 2012

Another brave young lady talking about TMAU on youtube



Another brave young lady talking about her systemic malodor condition and diminishing the taboo and raising awareness. Again we are all in her debt. Should they ever wish to delete their videos they will automatically disappear from here too, so no need to worry about that. Thank you girls. Someday society will know about systemic malodors, know it is an 'illness', and come up with ways to treat or cure it. At the moment we are stuck with only 'TMAU' as a diagnosis, which is probably an 'underdiagnosis' or even a 'misdiagnosis'. It is my own current belief that 'fecal body odor' is actually 'FMO3 substrate body odor' as I mention in previous posts.

This young lady goes on to further talk about TMAU on other videos on her youtube channel.
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re Email sub service : Google is stopping this service JULY 21 new post emails will no longer happen

TMAU Stories

systemic BO/halitosis important links

MEBO Research malodor study 2016

Youtube

FMO3 reference

FMO3 wiki link

Blog Archive

TMAU/FMO3 research

UCL TMAU grant from MRC

TMAU Reference links

Overview

Patient sites

Systemic Body Odor links

TMAU story on BBC World Service
email :
sysbodyodor@gmail.com

Do you have systemic body odor ?

FMO3 Survey Form

FMO3 DNA test result survey
for those who have FMO3 DNA tested
survey still OPEN

TMA blocker pill (links)

P&G - Cleveland press release aug 2015
1st mention of 'DMB pill' dec 2015
FMO3 DNA testing
Update Aug 17 :
Genos is back with it's EXOME test
link

Note :
Exome/Genome testing may be better option than single gene testing.

See this post : link

Note : Genos Exome Testing.

Exome testing is almost the same price now as single gene testing. Also Genos is consumer friendly, which standard DNA labs are not.

So the blog offer to test solely for FMO3 is almost obsolete, and so no longer offered.


Does Genos fully sequence FMO3 gene ?

At the moment it is not clear, but hoped this will become clear over the next few months

Note : possible 'wild west' way of testing FMO3
Use an ancestry dna site and rummage through the raw data

TMAU Webinar #5 : Preti et al