PROFESSIONAL VIDEO MADE ON OUR BEHALF NEEDS VOTES

malory · Post by **malory** » Wed Feb 15, 2012 10:46 pm

Dr Cheryl Fields was brave enough to make a professional video about our lives as odour sufferers. It is hoped it will get to be aired on CNN. Please, please support this fantastic initiative. Watch the video and VOTE FOR IT!! it is irrelevant that it is primarily about TMAU. Odour conditions have the same effect whether named or not. We all feel the same psychological pain. Our message will only be heard when we come together.

VOTE FOR THIS VIDEO NOW!!!
http://ireport.cnn.com/docs/DOC-748848

And thank you so much, Cheryl Fields.

halitosisux · Post by **halitosisux** » Wed Feb 15, 2012 11:42 pm

Why do they keep telling us that TMAU is this really rare condition when it affects at least 1% of the population? That's roughly 60 million people.

mike987 · Post by **mike987** » Thu Feb 16, 2012 2:32 am

Haha yeah. There may be more TMAU sufferers than there are wealthy people in the upperclass,but of course that 1 percent of wealth controls the entire country and influences the rest of the world.

halitosisux · Post by **halitosisux** » Thu Feb 16, 2012 7:30 am

I think there needs to be more awareness of how common it is.
The idea that most people have in their minds about TMAU is the person who stinks a whole house out of rotting fish - primary TMAU - the worst type caused by the most unfortunate type of genetic combination.

But as malory said, TMAU can manifest itself in other less severe ways which are far more common than most people realise. If there was more awareness of this fact, it would help to change attitudes towards odour conditions.

malory · Post by **malory** » Thu Feb 16, 2012 3:07 pm

Very good points made, guys.
I think if we consider ALL the people with incurable odour conditions(not just tmau) then this is not a rare phenomenon. If we come together to protest, then maybe that message will come across more strongly and people won't be able to fob as off as rarities/aliens.
We live in hope but better to do something than nothing

joe1 · Post by **joe1** » Thu Feb 16, 2012 3:19 pm

please guys vote!

deebo · Post by **deebo** » Thu Feb 16, 2012 9:43 pm

i think we can safely say that full blown primary tmau is very rare indeed. Someone on our skype group says 600 cases diagnosed so far .. world wide . these are people who suffer the rare full symptoms .

there may be a much higher percentage of folks with a lesser degree of tmau . this is plausible , but we may hardly notice them from day to day . anybody who comes across us folks with chronic powerful odor knows how rare it is . Far less than 1 in 100 .

whatever helps get the word out ,more awareness and research for chronic odor issues is all good. Go for it , fudge the numbers in the meantime

we can use all the good help we can muster

Vote http://ireport.cnn.com/docs/DOC-748848

skype skunkhugs

elliott · Post by **elliott** » Sat Feb 18, 2012 5:57 pm

Guys the point is not TMAU.

It is that anyone with any smell related issue needs others to be aware of what we go through on a daily basis.

The problem is really that people are uneducated, and do not have the natural tools to deal with people like us.

We should not be rejected in society because of issues we can't help.

Any other disease creates some sympathy. That's all we need here. Some understanding for our disease.

malory · Post by **malory** » Mon Feb 20, 2012 9:42 am

At the same time as e-mailing the official organisations, I will also e-mail any friends/acquaintances on 29th Feb with this e-mail:

Dear Friend,.

Thank you for your support in signing our petition (it can be done anonymously)
http://www.bloodbornebodyodorandhalitos ... nding.html

Although (secondary) TMAU and similar, un-named metabolic disorders are not as rare as the medical profession pretend, we are celebrating Rare Disease Day on Wednesday 29th February by promoting a video made by Dr Cheryl Fields to promote awareness of the condition(s). The video needs to be voted for in order to be aired on CNN. Please support us by voting for this video (it takes a minute to sign up to CNN for this purpose).
http://youtu.be/4SEN0nDtmmA

Also, please forward this e-mail to anyone who may be willing to support our cause.

Thank you

deebo · Post by **deebo** » Sun Mar 18, 2012 8:47 pm

Hi Malory .
Not sure if you've heard of this yet . AJ mentioned that you'd be interested in connecting with some celebrities to forward our cause . So far I think only Maria has emailed Kevin Krikst (writer i think) http://www.imdb.com/title/tt2091427/plotsummary

http://tinyurl.com/795r7xr

its still in post production so maybe there is a chance to be included in dvd special features ? =)

skunkhugs on skype

malory · Post by **malory** » Thu Mar 22, 2012 3:18 pm

Oh wow! No I hadn't heard of this before. Fantastic! A film about a TMAU sufferer. I'll ask Maria if she wants me to contact Kevin Krikst - don't want to muscle in - but, yes, I am looking for a celebrity to back our charity and am happy for any suggestions.
I always remind people to remember that MEBO Research represents ALL sufferers of odour anywhere (not just TMAU sufferers!).

Just read about some other positive news too. The Monell Chemical Senses Center (in California) are going to do some research into TMAU. Any research will apply to other metabolic odour conditions also.

The UK media are beginning to find TMAU/odour problems interesting. Here is a post by a journalist looking for a TMAU volunteer for an article:
My name's Emma and I'm a Features Editor for Caters News Agency, which is based in Birmingham.
I write for the national newspapers and women's magazines as well as having contacts with programmes like This Morning.
I understand you are probably bombarded with various requests from the media but I was wondering if you'd be able to help me?
I'm looking to write a piece about TMAU to help raise awareness of the condition so the public have a better understanding of it.
I know there is a bit of a social stigma surrounding TMAU and hopefully the piece could help to change that.
From what I've been reading a lot of doctors don't recognise TMAU so people are often forced to suffer in silence.
I would like to write a sensitive and informative piece about someone who has TMAU.
Would any of your members be interested in speaking to me to share their experience?
Everything would be read back prior to publication and they would also receive a fee for their time and trouble.

they can contact me directly. Either by email or on the numbers below. There's no pressure to go forward if they do get in touch. It would be an informal chat to begin with.

Many thanks,

emma[at]catersnews.com
Emma.

Music Lady · Post by **Music Lady** » Thu Mar 22, 2012 8:25 pm

Wow that video is pretty powerful Mallory!!