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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
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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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BO Sufferers Podcasts

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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, April 14, 2012

Message from Cheryl Fields : The Diversity Project


A MESSAGE FROM CHERYL
MEBO Research, Inc.
Community Outreach Director

"Our Background and Philosophy"

It was a few years ago employers were being sued because they didn't hire anyone they perceived gay or transgender, because in the 1980's they thought these employees would bring AIDS to the workplace and the work culture/environment would be ruined? It was during the civil rights era (1954-1963) in the US, where it was actually unlawful to a certain point to even THINK about hiring anyone who was black, African American, or "colored" back then, as the thinking at the time was the work place would be ruined or upset and people would have "panic" attacks by hiring co-workers/peers who were black or African American!

After the tragic events of the 11 September 2001 in the United States, employers, airlines, schools, etc. attempted to discriminate on anyone who appeared to be Muslim?

Recently in Arizona (2010-2012), the unconstitutionality of the new Arizona Immigration Law, which would allow police to stop any person they may find "suspicious" - or have "reasonable suspicion" that the individual is not in this country legally - and ask for the person's immigration papers--and/or anyone who LOOKS Hispanic, Mexican American, Latino, etc. Talk about a WEAK case!

The point is someone has to take a stand for causes, issues, or equal rights. And folks laughed in the 1980's about folks with AIDS or who were gay. Women's Rights (1848 to 1920), were thought to be an insane and laughing matter at the time, until someone stood up and began to fight for the rights of women in the US (and eventually across the world). The late Dorothea Lynde Dix (April 4, 1802 – July 17, 1887) was an American activist on behalf of the indigent insane who, through a vigorous program of lobbying state legislatures and the United States Congress, created the first generation of American mental asylums. During the Civil War, she served as Superintendent of Army Nurses. Folks actually thought Ms. Dix to be a witch, the devil, and/or just plain crazy/nuts! Thank goodness she stood up, because now people with mental illness are usually treated with respect, and dignity. Oh by the way, all of the cases I have stated were thought to be very "WEAK" and even "INSANE" at the time, but history tells us different. Change is slow and takes a continual battle. There are probably more examples many of you may have to share, I just wanted to share a few in this post.

The point is someone has to take a stand for causes, issues, or equal rights.
Just because something is one way, does not mean that it has to stay that way. Thank goodness the late Rosa Parks (December 4, 1955) sat down on the bus in 1955, because of her courageous efforts, I am able to STAND UP and fight for the causes I believe in.

Thank you all so very much gang.

I LOVE having a support group I can turn to at the end of the day and just "vent".

Very Sincerely,


Cheryl Fields
Dr. StillStanding----Somehow
(785)-286-7005, Home/Voice-Mail

Let us join forces with Cheryl in proactively pursuing our human rights to
  • Bring about workplace accommodations as a viable option to all sufferers
  • To raise social and political movements to establish government assistant programs geared toward enabling sufferers to live a productive and dignified life.
  • Change the "human heart and mind" around the world toward understand of body odor and halitosis conditions and towards extending the respect and dignity its sufferers deserve as human beings
THANK YOU CHERYL FOR SPEARHEADING
THIS VERY VALUABLE PROGRAM!






ADDENDUM by Maria de la Torre:

The United Nations Universal Declaration of Human Rights clearly states ethical principles held by most peoples throughout the world. In addition to stating what Cheryl presents above, it clearly depicts the world views on human rights to a "standard of living adequate for the health and well-being of himself and of his family..." Below are a few excerpts from this document.

Article 23.

(1) Everyone has the right to work, to free choice of employment, to just and favourable conditions of work and to protection against unemployment.
(2) Everyone, without any discrimination, has the right to equal pay for equal work.
(3) Everyone who works has the right to just and favourable remuneration ensuring for himself and his family an existence worthy of human dignity, and supplemented, if necessary, by other means of social protection.
(4) Everyone has the right to form and to join trade unions for the protection of his interests.

Article 24.

Everyone has the right to rest and leisure, including reasonable limitation of working hours and periodic holidays with pay.

Article 25.

(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
(2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.


In addition, I would like to quote a member of our community who wrote a post for this blog on November 11, 2008, The Malodorous People's Declaration of Rights by Benjamin Brimmer" in which he states,



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.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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