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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

MEBO Private Facebook Group
to join : go to
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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

Thursday, December 18, 2008

Topics discussed in last night's Women's Conference Call

In last night’s conference calls we began discussing how BO affects our personal relationships with our significant other. In our discussion, we noted that body odor doesn’t seem to stop some people from having a very active sexual life, and in some cases, with multiple partners resulting in infidelity issues, while others believe that their odor prevents them from establishing even one relationship. After much discussion, there seems to be the consensus that what really determines whether or not a sufferer will be in a relationship is how each individual sufferer deals with his or her own BO condition at an emotional level, along with all the same factors affecting non-sufferers, including personality types and social opportunities.

We also discussed the various remedies that have worked and not worked for bromhidrosis and hyperhidrosis including body odor cleanser alternatives, particularly around the groin area. Thai crystals (for external groin area – not vaginally), feminine washes, and corn starch were considered effective by those who have tried them, while Dial antibacterial soap seemed to be too drying. Some wondered if long term usage of this soap may be adversely affecting the healthy vaginal microbial balance.

We were most impressed with Dr. Richard Lord’s new way of looking at the quantification of intestinal microbial global composition using a stool testing method involving the DNA analysis of fecal microbiota. We noted how much more advantageous his method is compared to the old techniques of testing microflora using stool cultures. The Polylmerase Chain Reactions (PCR) approach provides a unique bacterial identification result that could then help a clinician restore the proper microflora balance in the gut. This much more accurate testing method determines whether a person has dysbiosis, which Dr. Lord defines as an overgrowth or lack of diversity of microflora. We were all very excited with the potential this new testing method which may provide us the opportunity to identify odor-producing bacteria, and thus help us manage and control our odor.

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