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Saturday, February 21, 2009

Body Odor and Halitosis : Political lobbying in the USA

contacts:
Email your Senator about systemic body odor and halitosis
Email the Senate Health commitee about your systemic body odor and halitosis
Email your Representative about systemic body odor and halitosis
Email the Whitehouse about systemic body odor and halitosis
Email the NIH about your systemic body odor and halitosis
Email the NIH Rare diseases dept about your systemic body odor and halitosis


MeBO Research hopes to influence politicians in the future. In the meantime, perhaps sufferers would like to write to the politicians themselves. Below is an example email that could be used. There is no other problem with so much shame and mental confusion, and probably subconsciously it may be viewed as trivial. but as sufferers know, it is far from trivial, and a tragedy that nothing is being done about it or even recognised by the medical community or accepted as a disability. It probably is amongst the highest suicide rate for 'non-essential' health issues. Perhaps it is behind a few unexplained suicides.

The letter below does not have to be used, although it can be. Anyone wishing to contact the politicians could use their own words or variations.

Dear Sir/Madam

I write to you with regards the socio-economic problems of body odor and halitosis, to raise awareness and to promote funding for research. You may not be aware that, thanks to the internet, it has become clear that most body odor sufferers have a SYSTEMIC body odor/halitosis issue, the problem being internal/bloodborne/metabolic. While trimethylaminuria is the only really recognised systemic odor condition (by the National Institutes of Health and those few physicians who are aware of it), it has become clear on internet forums that most sufferers have all sorts of systemic odor problems that incude fecal/gas/garbage/sewage smells through their skin, bodily fluids and breath.

To elaborate on my own problem with this disorder, I ... (tell a bit about your own problem, including especially the type of odor)

The NIH has set up a few Taste and Smell clinics over the years, with the aim of dealing with problems affecting the senses of taste and smell. Whether people kill themselves with these types of disorders, or how much it affects life quality and careers, is unknown to me. It must be very unlikely that someone with these disorders who is a fine worker would affect productivity, or be viewed as a burden to the management. They wouldn't seem to affect national productivity, and the misery must be limited to a degree.

Compare that to systemic body odor and halitosis. Do you not think it would be a very good idea for the NIH to set up a Body Odor and Halitosis research center and clinic(s) ? Any scientist involved in such a task would soon find that most sufferers who care about this problem have a metabolic type of odor problem, but it could also research the classic external kind as well. I think you would find systemic body odor and halitosis is far more common than thought. The only recognised type of systemic body odor is trimethylaminuria. If you check how sufferers in the USA currently get any sort of medical interest in this condition, I think you will be dismayed. Geneticists estimate 1% could be at risk of transient TMAU. People kill themselves over this, life goals can be written off, and it probably affects the economy and social security system.

It would be in the nations (and the worlds) interest to research systemic body odor and halitosis.

There are many other ways the government could help, such as setting up job opportunities for sufferers that involve staying at home (such as internet jobs). The misery of such a problem, and burden on society, cannot be understated.

Below are 4 websites that may help you in understanding the size of this problem. Anyone investigating the problem will find it to be quite a sizeable issue.

http://www.bloodbornebodyodorandhalitosis.com/
http://www.bodyodorsupport.com/forum.php
http://health.groups.yahoo.com/group/Trimethylaminuria/messages
http://curezone.com/forums/f.asp?f=326

If you need further information or more convincing, you could contact me or the above links. It is not a rare problem.

thank you,
name

I sent an email to ... (pick one or more)

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