embarassing bodies website

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embarassing bodies website

Postby treacle » Tue Aug 07, 2012 1:12 pm

Hi all
I don't know if this has already been highlighted but the TMAU info page on the Embarrassing Bodies website is worded completely inappropriately in my view :x I have emailed them via their feedback form today in an effort to get it changed. I'd encourage you to do the same. Have a look

http://www.channel4embarrassingillnesse ... e#comments

Feedback form is here http://www.channel4embarrassingillnesses.com/feedback/

If several people contact them they may revise it.
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Re: embarassing bodies website

Postby treacle » Fri Aug 10, 2012 10:59 pm

Success! Channel 4 have changed their offensively worded article on TMAU! well done everyone who complained! :D
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Re: embarassing bodies website

Postby malory » Sat Aug 11, 2012 6:12 pm

Well done everybody who wrote to the programme and got the definition changed. I must say that i am absolutely furious about this and I am still unhappy with their description.
so I posted this on their site:

well done to the TMAU and odour sufferers community for addressing this definition of TMAU. Fortunately, I didn't read it but, to be honest, I am disgusted by the references within the now-removed definition and furious that the TMAU community were not consulted with for the writing of the description. However,I am still not satisfied with the definition and would like you to take my comments into account:
a)please refer to the disorder as TMAU or Trimethylaminuria ('fish odour syndrome' in brackets only) because, as I explained on national TV alongside Dawn Harper, the title 'fish odour syndrome' is misleading and stopped me from getting diagnosed.
b)please do not patronise our community by describing an odour disorder as 'a tad distracting or embarrassing' because this is an insult to those who suffer severe depression as a result of the acute social isolation resulting from this condition (again, I did mention this on national TV alongside Dawn Harper)
C)Please refer to 'a pungent odour which can smell of rotten eggs, faeces or rotten fish' and do not limit the smell to 'fish' because this is scientifically innacurate.
d) Please amend the following; "variety of antibiotics and probiotics available that can help ease the condition" by inserting the phrase 'in some cases' in front of 'can help ease..."
e)Please refer sufferers of odour conditions to TMAU.org or MEBO Research for further information as most doctors are unaware of the condition.

This situation is such shame because many people realised they had a metabolic disorder of some kind after seeing this programme so it has been instrumental in helping people find help or acquire diagnosis. The problem with this programme is that it:
tends to hype the 'novelty' aspect of unusual illnesses and it wishes to present the doctor as a God-like figure who cures all the illnesses presented.
This has led to a very damaging situation in which the medical profession are presenting the idea that TMAU is easily curable. My partner told a friend that I had TMAU and the friend replied "Ah yes I saw that on telly. It's curable though, isn't it?"
Well, if it is, I'm still waiting, because even though my TMA levels are lower than average, the odour persists as strong as ever.
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Re: embarassing bodies website

Postby bubbles » Sun Aug 12, 2012 3:28 pm

Malory just out of interest are your levels now within the reference range now? Or do you mean that they are lower than they were but still outside the reference range? I am just curious, I hope you dont mind as I have never gone to be retested after my initial diagnosis for fear that;
A) My results would be worse than before and I dont know if I could endure that.
B) For having to go through it all again with my GP who is a lovely man but I fear a tad skeptical about TMAU (I was diagnosed with OCD re smell and my belief that I smelt badly at times before my TMAU diagnosis!!)
C) That being on the low choline diet my levels might be within the reference range and therefore my GP and others might say that first time was a fluke and you never had that at all even though I have been describing tmau symptoms for the best part of twelve years even before I knew what it was as I only found out about the disorder last June.

Many thanks Bubbles
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Re: embarassing bodies website

Postby Weak » Mon Aug 13, 2012 4:08 am

Wasnt aware something like this was going on. The worst part about it is that they could have easily have remedied this situation with a 10minute google search prior to posting that definition. It just goes to show how little people care. I mean they dont have to litterally care about us but atleast give us the courtesy of a respectful definition.
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