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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

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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

Tuesday, November 18, 2008

Anthology Update 3 from Richard


T he first draft of the anthology manuscript will be posted some time between Sunday,
November 23 and Wednesday, the 26th. After reading it, you do not necessarily have to be a contributor to the project in order to give any ideas you may have to improve the book. You can either post your idea(s) on the Poetry/Stories board or email them to me. I will use your idea only if I believe it will increase our chances of the book being published. Keep in mind that this is only the first draft. I hope to submit the final draft no
later than early January to our publishing company, Whitmore Publishing (whitmore
publishing.com). This first draft will not have any illustrations because our artist, Ben, will not be able to include his drawings until later.

If you are a contributor, please look over your work carefully and let me know if there have been any changes that you are not satisfied with.


Also, any new members coming into the group up until December 11 who wishes to participate in some way in this project, please email me at richardrcook2@aol.com. One last such request will be posted on both the General and Poetry/Stories boards several days before that deadline.

With this anthology we simply want the world to know that we exist as a community of people that is trying to get the scientific community more involved in helping us with this medical condition. We know society is disgusted by us, which is why another goal of the book is to give people a glimpse of how their meanness affects us and how cruel and unnecessary it is; to give them a little tour into our world.

I want to prepare everyone for the possibility that this is only the beginning of a long road to getting our book published. If we’re lucky, the first publishing company will accept our manuscript. If not, buckle your seatbelt and settle back because it might be a while before we reach our destination. Hopefully the road won’t be too bumpy. One thing I can guarantee is that I will not give up on this project until our book is published.
And once it is, I wish there was some way we could all get together for a party—only us. Or maybe we can have some sort of online party?

Richard


original anthology post

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