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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


Full details : https://goo.gl/TMw8xu
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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to join : go to
or contact
Join/Watch the weekly
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
MEBO Research is a
EURORDIS and
NORD Member Organization
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

Monday, August 18, 2008

Tell your BO experience : be a part of an anthology of short stories and poetry

In a concerted effort to raise social awareness of bloodborne body odor and bloodborne halitosis conditions and to promote major research to find a cure, a new project is being initiated, an anthology of original essays, short stories, and poems written, edited, and published by sufferers and or family members under the direction of our Editors, Richard and Stephanie. In addition to contributing some of his own work, Richard will assume the task of designing, compiling and organizing anthologies of sufferers’ original essays and short stories that may be autobiographical, biographical, or fictional, whether somber or humorous in nature. Stephanie will do the same with her own and other sufferers’ beautiful poetry.

Already various projects have been put into action since May 2008, including this blog, Arun Nagrath’s scientific questionnaire, and now the initiation of this anthology. As intended in its design, this blog has been a very effective tool in bringing sufferers from various forums and experts together, as in only the past three weeks of the questionnaire’s inception, 84 sufferers have already participated, with new additional sufferers taking this survey on a daily basis. We are very pleased with this very strong, positive response to both the blog and the questionnaire.

As the questionnaire attempts to measure the physical causes and symptomatology of body odor conditions, this anthology will address the psychosocial aspect of these metabolic conditions as presented collectively in a creative literary medium by sufferers. In an effort to promote a higher social consciousness of daily emotional assaults and of the consequent deep emotional injuries which frequently results in grave, life-threatening mental illness, the proposed intent of this work is to vividly portray the systematic social isolation, destruction of careers, threatened basic livelihoods, and broken relationships into which a sufferer is coerced. Most importantly, it will highlight the valiant, extraordinary attempts sufferers must resort to rise to on a daily basis to face and cope with this overbearing social oppression and seclusion that deprives us of our basic human rights.

If you and/or your family members are interested in participating in this project, please see Richard’s post on the MSN body odor forum, with specific instructions on how to contact him or Stephanie to get started. Also see http://mpdela.blogspot.com/2008/08/guidelines-for-writing-your-essay-for_30.html for guidelines for writing your essay and short story.

IMPORTANT: If you are writing an essay or short story, please post in the forum, but rather email them as an attachment to Richard directly at Richardrcook2@aol.com.

However, please do post your poems directly in MSN http://groups.msn.com/BodyOdorSupport/poetrystories.msnw


María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization

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