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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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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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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

Saturday, November 15, 2008

The Malodorous People's Declaration of Rights by Benjamin Brimmer

Introduction : A pertinent Declaration for people of malodor around the world by Benjamin Rimmer and from the MSN Body Odor forum. If you would like your name to be added to the list of signees at the bottom of this document, please state so in the comment option below. State your name as you would like it to appear on this document and please state what country you live in to indicate the universality of this problem. I will then type it in the document for you. This document may be used in the future to raise social awareness, for fund raising purposes, and for any other process that may ensure our rights. Thank you for your support


When in the Course of human Events, it becomes necessary for one group of People to state their grievances with fellow humankind, and to assume among the Powers of the Earth, the Nondiscriminatory and Equal Station to which the Laws of Nature and of Nature's God entitle them, a decent Respect to the Opinions of Mankind requires that they should declare the causes which impel them to seek such Equality of Rights.

We hold these truths to be self-evident, that all humans are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the Pursuit of Happiness. Throughout History, Humankind has long oppressed and emotionally scarred our fellow Brothers and Sisters, of which are unfortunate Victims of various malodorous Medical Conditions. Prudence will dictate that the Status Quo should not be changed for light and transient Causes; and accordingly, We do not request anything other than an Entitlement Due to all Humans; all people have the Due Right to uphold their Dignity, no matter however Nature and God chose to endow each and every one of Us. Therefore, We the Malodorous People Unite, and firmly assert our grievance; all that We ask for is Respect. To secure these Rights, we the Malodorous People of God's Great Earth, do now state cause for our collective grievance against humanity. Let these Facts be submitted to a candid World. Humanity has oppressed our Aspirations by means of Discrimination, Harassment, and Indignities of which We have been subjected.

Humanity has stripped Us of our Dignity, denies Us our due Respect, and injured our Reputation.

Humanity has suppressed our Emotional well-being, forcing Us into Solitude and Depression.

Humanity has Siphoned the very substance of our Souls, Depressing any reason for Rejoicing.

Humanity has Infected our minds, making Us think that We are Insignificant, Substandard, and Unwanted.

Employers have wrongfully Terminated our right to employment due to our Condition, and Not due to our Performance.

Employers refuse to consider Us for Employment upon interview due to our Condition.

Employers and employees employ strategic Tactics in order to cause Us to Abandon our positions and Quit the company.

Doctors have ignored our symptoms and complaints, regarding Us as Hypochondriacs.

Doctors have suggested We take Mental medication to alleviate out Mental condition, when we have a Physical condition that affects our Health.

Friends have Abandoned Us, family does not believe Us, and even our pets turn up their noses and turn tail to escape Us.

In every stage and event of our Oppression, We have remained Reclusive in disquietude. Any action We have taken toward Resolving our complaints against humanity have been answered with Doubt, Disbelief, and total Rejection, thereby adding insult to injury.

We, therefore, the Malodorous People of The World, do make this grievance in order that the common people of the world do Realize that our Medical Condition is not of our Will, but forced upon Us by Nature's endowments. Further, We assert that We give every effort to Combat this malodorous stench that clings to Us, albeit with limited success. Additionally, we encourage any enlistment of those that may have Solutions to our Dilemma. We Reek not of our Will, though We are United as One; a malodorous family that seeks only Respect and Understanding.

Signed,

Benjamin Rimmer, USA
María de la Torre, USA
Richard R. Cook, Jr., USA
Sonya L. McClinton, USA
Sue Hopper USA
Kristen Jugueta, Australia
Lori A Jester, USA
Latisha Williams, USA
Rebecca Harper-Lloyd, USA
Irene Hunter, Scotland
+ all other Malodorous People of the Earth.
RIP, Ben 1979 - 2018 https://www.legacy.com/obituaries/twincities/obituary.aspx?n=benjamin-rimmer-rabbit&pid=189253020&fhid=2880

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