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Write to your local MP!!

Postby malory » Fri Apr 07, 2017 2:09 pm

http://www.parliament.uk/mps-lords-and-offices/mps/

There's a campaign on RareConnect. Here is a copy of the post I found on there to help us write letters to the mps.

UK CAMPAIGN : EMAIL MP'S
heres a template letter if anyone wants to send.

idea is maybe :
1 send to local MP
2. send to MP interested in health

Of course people could adapt it for their own country politicians.

******

Dear

re Trimethylaminuria (TMAU)

TMAU is the only systemic/metabolic body/breath malodor currently documented.

While the severe form is rare, the 'mild' transient type could be fairly common. The 2 common polymorphs, about 10% Caucasians are estimated to carry. This does not mean 10% have 'smell issues, but among this group a fair amount may be 'prone' to transient smells.
It also appears to be across both genders and all ethnicities.

TMAU origins (1970)
TMAU was a 'guess' at a volatile to test for a 'fishy smell' back in 1970. Since then no other smelly volatile has been tested. Most TMAU people do not identify with a fishy smell, but rather a broad spectrum of 'bowel' smells.

While many sufferers don't think TMA alone is the sole volatile, or even a main player, it should be a good biomarker of FMO3 function, and for now is the only 'volatile' to rally round the concept of 'systemic body odor'.
So for now we will focus our aims on TMAU.

FMO3
FMO3 is the enzyme regarded as meant to neutralize TMA. It is an oxidizing enzyme that neutralizes/activates many smelly volatiles/compounds in humans.
You could say TMA oxidation is a good biomarker of FMO3 function.

TMAU ignorance
Probably about 20 researchers have ever taken an interest in TMAU. None are actively interested for maybe 10 years or more.
There were 2 conferences set up in 1999 and 2002, but these fizzled out.
Probably only a handful of health professionals know of TMAU.
About 99.999% will not.
For GPs it may be higher.

A consensus among the group is :
The understanding and of TMAU is very basic and the 'treatment' does not work and may be bad for your health (choline being important for liver function).
Currently nothing is being done research-wise.

A few points about TMAU
1. the person usually cannot smell themselves.
2. most cases would seem to be transient.
3. Unlike probably all other 'rare disorders', the person will start seeking answers as an adult or teen. It is not a Dr-led diagnosis.
4. The group are pretty disorganised (partly to do with shame) and could use help to get organised.

UK Political Help
Here is a list of ways a UK politician may help the TMAU cause :
In reply, you may use this list with your answer if you want.

1. Become a TMAU UK group 'Patron' (or similar title. Could be from title-only to some extra duties).

2. Form/Join a TMAU All Party Parliamentary Group.
This could perhaps be for a few meetings only, or a trial basis. Mainly to have a thorough look at the subject in the House.

3. Attend a Charles Dent UCL 'TMAU Group' quarterly meeting.
There have been 2 meetings so far (perhaps a new NHS law ?). Since it's near the House, perhaps you could attend. Or attend one at a regional metabolic unit (so far only Birrmingham known).

4. Help in finding a broker for the TMAU test to subvert the 'NHS professional-only' testing law.
HIV testing is now available via direct-testing. Since TMAU is an 'adult' disorder, and GPs won't know of it, people want to test direct and self-pay. If you could help us in source an agreed method of testing this would take away our greatest anxiety.

5. Ask a TMAU question in the House

6. Help with publicity, advice etc.

7. Help us organise.

Or any other ideas you care to mention.

There are 2 things regarding potential treatment :
1. What could be done now.
Possibly a lot could.
e.g. using enzymes to metabolize TMA in the gut. TMA can be put down the 'methane route' by enzymes in certain microbes. Also an 'FMO3 pill' has been suggested, as most of the load may be in the gut.

2. What could be done in the future (gene therapy etc)

So probably things could be done now, which are not of interest to researchers, pharma companies etc.

Thank you

Some links about TMAU
https://youtu.be/7IPV72B4-3c
https://youtu.be/qrW_QYk6zRI
https://youtu.be/U8RriLVkXdw (severe case)
https://youtu.be/FnETAQHepX8
https://youtu.be/SN-7KWLqjMw
https://youtu.be/4Iqb42_pVk0

http://middleeast.thelancet.com/journals/l...
https://www.ncbi.nlm.nih.gov/books/NBK1103/

TMAU testing among a random group from Imperial College.
https://www.ncbi.nlm.nih.gov/pubmed/8893042
Back then, <80% was the '+ve' ref. range. This is now <94% for '+ve'.
This would make 3.8% of this 421 now 'TMAU +ve'.
malory
 
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Location: London -west

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