The Website Blog (News & Updates)

17/03/2017

This website has applied to joing the genetic alliance UK website.
See https://www.geneticalliance.org.uk/ 


14/10/2015

Late onset TMAU - an explanation by Dr Dolphin - see here for full details.

I have posted the last part in the blog as I get many emails and questions around this;

Your points are well made and I think you've essentially answered your own question - the situation, in some cases, quite complex.
 
As you know an individual homozygous for null (loss-of-function) FMO3 mutations will have zero, or very close to zero, TMA N-oxidase activity and thus any TMA reaching the liver from the hepatic-portal circulation will not be oxidised and odour breakthrough will occur. One thing that might be relevant here with respect to 'late onset TMAU1' is that in some people the gut microbe population may be producing very little TMA early on in life and that the species composition changes with age with a shift to more 'TMA producers'. The microbial enzymes that generate TMA from choline (1) and carnitine (2) have now been identified (although there may be others) and these are expressed in particular phyla so if these were absent or low in childhood then there may be little TMA production and odour will be reduced or absent perhaps helped by not eating much in the way of TMA-containing precursors. This may be more relevant in heterozygotes.
 
But to have TMAU1 then the subject needs to be at least heterozygous for some form of reduced-function or loss-of-function mutation. Of course there may well be 'mutations' that have yet to be identified that might be located in the FMO3 coding sequence or, indeed as you suggest, in the 'promoter' region that reduces expression of the gene.
 
I think the thing to remember is that the breakthrough of odour in TMAU1 or 2 is due to a dynamic interplay between TMA production by diverse gut microbes (which we're only just beginning to understand at an enzymatic level) and FMO3 'activity' at any particular time that can be affected by many things including, but not restricted to, genetics.
 
1) Microbial conversion of choline to trimethylamine requires a glycyl radical enzyme
By: Craciun, Smaranda; Balskus, Emily P.
PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES OF THE UNITED STATES OF AMERICA Volume: 109 Issue: 52 Pages: 21307-21312 Published: DEC 26 2012 
2) Carnitine metabolism to trimethylamine by an unusual Rieske-type oxygenase from human microbiota
By: Zhu, Yijun; Jameson, Eleanor; Crosatti, Marialuisa; et al.
PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES OF THE UNITED STATES OF AMERICA Volume: 111 Issue: 11 Pages: 4268-4273 Published: MAR 18 2014
 


18/05/2015

Channel 5 asks for help to find TMAU volunteer

see here for more 
Hello, I hope you're well.

Tigress Productions are making a new documentary series for Channel 5, following medical mysteries from both the patient and consultant perspectives.

We’re still on the lookout for active cases and case studies to include in the series and so I was wondering if you have any current/retrospective cases of TMAU that you’d consider telling us about?

We’re looking for stories that have a detective element – that have perhaps flummoxed the medical profession or taken a long chain of treatments to reach a diagnosis/cure.

The series will not be presenter-led and will rely on interviews with experts in the field and personal testimony from those affected which is one of the reasons I’m contacting you.

We are still in the early stages of production (filming commences early June until August) so it would be great if you'd let your members know about our production.

There is of course, no obligation for them to proceed as contributors on our series, but it could be a great opportunity to get some national coverage for TMAU. Any members interested in talking to me can call me on: 0117 933 xxxx

I'm happy to give you more information and a call-out poster if you need more information.

Best Wishes,
Hxxxx.

24/04/2015

Request from the press to cover a TMAU story;
 
Paisley Gilmour < This email address is being protected from spambots. You need JavaScript enabled to view it. >

Hi there
I was hoping to speak to someone about national press opportunities.
I am features editor at Talk to the Press, an award-winning press agency, and I am looking for people diagnosed with TMAU to work with on features for the national newspapers.
I have had an exclusive page in the Sunday Mirror working with Ellie, a TMAU sufferer which you can read here:
http://www.mirror.co.uk/news/weird-news/ive-suffered-14-years-smelling-3380410
Ellie also went on This Morning and had two women's magazine deals.
Is there anyone you could put me in touch with who might want to help raise awareness in the national media?
We would make sure you get a plug in the piece and the case study would be paid for their time too.
All the best,
Paisley


17/09/2014

Apparently Burien in USA has passed a law making it illegal to smell bad:


 

London Meetup Sept 13th and 14th 2014 1pm till late;
see the following
 
 
Interesting press article ; 
 
 
 
June 2014. 
Forum Issues - the problems with posting in the forums was due to a web hosting upgrade, this broke some of the forum code, now fixed - apologies to all who couldn't post.
 
 
 
 
More TMAU stuff to come shortly, BTW the 'Getting Tested' guide has been updated so please check this out