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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts



TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned

Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
NORD Member Organization
See RareConnect TMAU

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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

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. 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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