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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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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

Sunday, December 23, 2012

Johnson & Johnson removes harmful chemicals


In an effort to control the pH of the odorous chemicals on our skin, sufferers of various types of body odor have been using acidic or pH balanced skin cleansers and lotions like Neutrogena and baby shampoo, both Johnson & Johnson products, amongst others. See multiple posts in this blog on skin cleansers.

One of the suggestions on The trimethylaminuria paper published the NIH Gene reviews site, by Drs. Phillips and Shephard, London, for a TMAU (trimethylaminuria) management protocol is the use of an acid soap/cleanser, with some containing salicylic acid, to attempt to neutralize the highly alkaline trimethylamine. However, other odorous chemicals other than TMA might not be as alkaline, or may be more acidic, and therefore, a neutral pH cleanser or lotion might be more effective.

And now J&J vows to remove formaldehyde from its products by the end of 2015.
Johnson & Johnson products offer both acidic (containing salycilic acid) and pH balanced products, which would make their products very attractive to our community. Nevertheless, environmental and consumer groups have been pressuring this company and its competitors to remove questionable chemical ingredients for them. As a result, J&J has vowed to remove certain chemicals from baby products by 2013, including well-known brands like Neutrogena, Aveeno, and Clean & Clear. And now J&J vows to remove formaldehyde from its products by the end of 2015.


Johnson & Johnson, which makes a range of personal care products like baby shampoo, acne cream and antiwrinkle lotion, announced plans Wednesday to remove a host of potentially harmful chemicals, like formaldehyde, from its line of consumer products by the end of 2015, becoming the first major consumer products company to make such a widespread commitment.

The New York Times
August 15, 2012


María

María de la Torre
Founder and Executive Director

A Public Charity
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maria.delatorre@meboresearch.org
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A EURORDIS and NORD Member Organization

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