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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


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want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

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

NO LONGER RECRUITING

Participation info : LINK English

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BO Sufferers Podcasts

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Petitions

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
NCT02683876

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
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See RareConnect
rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, July 28, 2009

Lobbying politicians about body odor and halitosis

As time goes by, it makes sense for the body odor and halitosis community to lobby politicians to do something about the said conditions. Especially since in most cases, it has nothing to do with hygiene, and sufferers are very clean and 'unwilling' sufferers. It is in most cases probably a medical condition. Probably the community will learn how to best organise themselves over the years, but perhaps a starting point is to write to President Obama using his contact form. The next part of the plan is what exactly to write ? Again this will likely develop naturally as time goes by, but for now the blog has written the President informing him of the large number of sufferers of what is likely metabolic body odor, and asked him to instruct the NIH to set up a Body Odor and halitosis research center and clinic since this would be a very efficient way of dealing with the issue. It was also pointed out a smell & disorder clinic had been set up by the NIH many years ago, to what many may feel has a far far lower 'suicide/dismissal/unemployment rate' than body odor or halitosis. Obviously we expect the letter to have no impact but you never know. Hopefully it will also stimulate ideas as to how to influence politicians, and what our aims are. Perhaps someday all politicians will be aware of metabolic body odor and halitosis, like any other medical condition.

you can write President Obama here : http://www.whitehouse.gov/CONTACT/ Write to your senator : http://www.senate.gov/general/contact_information/senators_cfm.cfm Contact the NIH advisory commitee : http://acd.od.nih.gov/Contact.asp

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