# London meet up and MP campaign



## yellow11 (May 14, 2011)

Hi all,

Here is am email I got from an emailing list of a very wonderful lady called Karen James. Karen is one of the very few activists for people with mal-odour issues in the UK.

Unfortunately I'm not in the UK so won't be attending the meetups but think it might be a great opportunity for some people on here to meet others in a similar predicament to themselves face to face. -

Hi,

please reproduce/distribute these messages below.

Best wishes,
Karen

1)

LONDON MEET UP WEEKEND SATURDAY 8TH AND SUNDAY 9TH JUNE 2019

We will meet from 2pm on both days at the front (main entrance/foyer) of Royal Festival Hall in South Bank.
https://www.southbankcentre.co.uk/venues/royal-festival-hall
This venue has indoor and outdoor areas; it is spacious, has plenty of bars and also street theatre nearby, plus Jubilee Gardens. Everybody is very welcome to come and will feel comfortable in our company. No photographs will be taken without permission, and people's privacy is always respected. Please come along and talk about anything and everything. We will welcome you whatever mood you're in!!
If you can't find us when you arrive, please ring: 07505590972

2)
UK ACTIVISTS ARE SENDING EMAILS TO MPS THIS WEEK.
PLEASE WRITE TO YOUR LOCAL MP TO SUPPORT THE EFFORT. IT DOESN'T MATTER IF YOU'VE ALREADY SENT THE MP A MESSAGE BEFORE. THE INTENTION IS THAT MANY DIFFERENT MPs WILL RECEIVE AN EMAIL AT THE SAME TIME. https://dpac.uk.net/2018/02/list-of-mps-email-addresses/

I will send the message below:

Many thanks in advance for taking the time to read my email about metabolic body and breath odours such as Trimethylaminuria. Our community are having difficulty conveying the importance of these disorders to medical institutions.

Trimethylaminuria (TMAU) is only one of a number of metabolic body and breath malodour conditions and represents the tip of an iceberg. It is highly under-diagnosed (poorly recognised/misunderstood by health professionals and also inadequately tested for). The body's inability to neutralise malodorous gaseous compounds, such as trimethylamine, is absolutely not a hygiene issue. Moreover, malodorous chemicals are actually worsened by the use of perfumes. The smelly gases emitted from the body and bodily fluids, which include fecal, rotten egg, rotten fish and ammonia smells, are overwhelming and repellent, causing nausea and allergic-type reactions in many people.

The (TMAU) treatment protocol (dietary choline restriction, rotations of antibiotics, B2 supplementation, chlorophyll, activated charcoal) is ineffective for many people and, even in the cases where choline restriction has successful results, the repercussions are dangerous; choline is a vital nutrient and deficiency leads to health implications.

Malodour disorder impacts negatively on every aspect of the sufferer's life, and this impact is much more severe in children and teenagers. It impedes normal social interactions, work and school relationships, intimate relationships (devastating for teenagers!) and generally taints the sufferer's personality development, causing anger, frustration and despair.

As people's educational achievements and career paths are negatively affected by this disorder, the economic implications are obvious. Many of us are unemployed or under-employed as a result of it. Students struggle to finish education and are discriminated against in the workplace even when they do finish their studies.

Inappropriate treatments and misplaced diagnostic investigations for patients complaining of bad odour are costly to the NHS. Counselling of malodour patients is also costly. A proper cure would be more cost effective.

How you can help us:

Please pose a question in parliament: ask the health secretary to enable a conference in conjunction with UCLH medical professionals and TMAU community members to discuss improving diagnostic testing for these conditions and research into finding solutions.

Please tweet to raise awareness of metabolic body and breath odour conditions among medical practitioners and the general public.


----------

