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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

Scroll down and select country
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
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

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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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Tuesday, November 17, 2009

Trimethylaminuria article in 'The exceptional parent' 2003 by Rick Rader

This is a 2003 article about attitudes towards trimethylaminuria by Rick Rader, a 'medical futurist', logically predicting the future for people with neurodevelopmental problems. He was invited to the 2nd Trimethylaminuria workshop in 2002 to speak about the Psychosocial Aspects of The Trimethylaminuria Experience.

His initial attitude towards TMAU, when compared to other health disorders, is probably typical, but as he meets sufferers he realises what a devastating mental affect the condition has on the sufferer. Indeed, it should be regarded as a disability.

...In many ways, trimethylaminuria is a model of the entire negative discordance directed towards people who seem different to others. It's the template disorder for all conditions that cause people to disengage from social affiliation. While social affiliation is not unique to our species it is indeed the center of our existence, our cement and our prevailing universality.

Trimethylaminuria seems to be a disorder that most certainly could have had its roots in classic mythology. These spellbinding stories are used to explain our random and threatening universe, natural phenomena, character flaws and our dark side. There must be a tale in Norse mythology that explains how this curse came to be. It seems too significant an entity to blame on the flavin-containing monooxygenase 3 enzyme (FMO3). Surely Odin could have grown tired of dealing with the wolf Fenrir, the monstrous offspring of the fire god Loki, and burdened him with the eternal odor of Jormungand, the giant sea serpent. The stench of a rotting sea serpent would probably get any Norse god's attention. I like that explanation much better than that of some enzyme gone amok...

... When eight-year-olds with trimethylaminuria confide in you that they wish they had cancer or needed to use wheelchairs or had third-degree burns, so they wouldn't have to explain the unexplainable to their classmates, you get a clear focus on the depth of their despair. When their embarrassment and social phobias confine them to closets and shut them off from school, sports, parties, friends and the richness of life, then you can start to appreciate that disabilities come in all forms. Extrapolating from the definition of art, anything that disables is disabling...

Full article
Rick Rader's 2003 trimethylaminuira article : On being downwind of disrupted lives

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