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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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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

Thursday, March 5, 2009

The flight took off again, but the woman was not allowed back on the plane.

it looks like even the 'severe TMAU' cases, those who scored very low in the tma-n-o % output, weren't smelling until after the choline challenge) ... and to complicate things further it seems very possible that a % of the population can't generally smell smellers at all (possibly 'carriers' ?), despite both carrier and sufferer seemingly having the ability to smell such smells from other sources (e.g. a stink bomb)One of the (multitude of) problems with systemic body odor (and presumably external body odor and both forms of halitosis) is that mostly the sufferer can't smell themselves. This makes it impossible for the sufferer to understand the pattern, and likewise makes it difficult for the medical system to 'record cases'. It would be very interesting to hear both the sufferers impression of their problem, and also from those who suffer the symptoms ... those that can smell the sufferer! Some stories are turning up on yahoo answers (search 'body odor') where the problem is being raised from the 'observers' point of view rather than the sufferers. Longterm that kind of information may be vital to understanding the problem, unless science can help out instead. Ways will be investigated to overcome this initial hurdle.

Meanwhile we can look at stories in the press, but we have to make a lot of assumptions, and unfortunately its ambiguous enough for any medical experts reading the story to draw other conclusions (hence the likely creation of diagnosis' such as olfactory reference syndrome and halitophobia.) Another point is that it is possible that most people are transient smellers (in the Dr Preti paper where he studied a group of sufferers, it looks like even the 'severe TMAU' cases, those who scored very low in the tma-n-o % output, weren't smelling until after the choline challenge)... and to complicate things further it seems very possible that a % of the population can't generally smell smellers at all (possibly 'carriers' ?), despite both carrier and sufferer seemingly having the ability to smell such smells from other sources (e.g. a stink bomb).

in this case, they say 'flatulence;' and then that she says she has body odor. An assumption would be she has 'fecal body odor' (which in most times may possibly be 'gas body odor' in practice), she may have got a TMAU diagnosis, and she may not have been smelling at all on the flight. But it goes to show how the problem ruins lives.


Flatulence brought 99 passengers on an American Airlines flight to an unscheduled visit to Nashville early Monday morning.

American Flight 1053, from Washington Reagan National Airport and bound for Dallas/Fort Worth, made an emergency landing here after passengers reported smelling struck matches, said Lynne Lowrance, a spokeswoman for the Nashville International Airport Authority.

The plane landed safely. The FBI, Transportation Safety Administration and airport authority responded to the emergency, Lowrance said.

The passengers and five crewmembers were brought off the plane, together with all the luggage, to go through security checks again. Bomb-sniffing dogs found spent matches.

The FBI questioned a passenger who admitted she struck the matches in an attempt to conceal body odor, Lowrance said. The woman lives near Dallas and has a medical condition.

http://www.usatoday.com/travel/flights/2006-12-05-flatulence-landing_x.htm

http://www.nytimes.com/2006/12/06/us/06brfs-FLIGHT.html

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