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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

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 Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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or contact
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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

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Blog Archive

by 25 march ... nih framework survey
have your say (anon welcome) ... link to nih survey

MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Monday, February 3, 2020

Young Florida lady talks TMAU on her local TV news

Dec 2019 :
Young lady from Florida talks about having Trimethylaminuria (TMAU) on the local news.

Alyssa was in kindergarten in North Okaloosa County, when her mom told her she had a rare disease commonly called "fish odor syndrome." Sometimes the smell is not noticeable at all. Other times, such as when she exercises, it can be very strong ...

... Some people with Trimethylaminuria fight depression and thoughts of suicide. Alyssa is determined to live on her terms. As she heads into her mid-teens, when dating could come to the forefront, she says she's not afraid. Alyssa explained, "It's like if they don't want to be with me or be around me because of it, then they don't deserve me. And I don't care."
Link to transcript and video : weartv.com

15 year old Alyssa talks to her local news station about having TMAU.
The community thank you Alyssa, as it is a very taboo subject.
Her attitude is fantastic.
Note : the item was on the news on 25 Dec 2019

Possible actions :
Send a link to the NIH Director Francis Collins.
Ask to get on local news ?
Ad campaign ?
Other ideas ?

Comment :
Its been a long time since a TMAU item was on TV news or TV at all. Maybe since people now take to youtube, which is there for everyone always.
It's not clear how much impact such an item has on awareness, but everything is welcome !
Probably the big impacts would be high-audience shows, popular youtube channels, or an ad campaign ? 

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A EURORDIS and NORD Member Organization

2 comments:

Pdag said...

I hope we can be friends alyssa i am from canada i am also a tmau patient....i dont have mich friends because of my tmau....

Feb 3, 2020, 10:57:00 PM
Unknown said...

I am pretty sure I have TMUH but nobody test here how can I get tested? This has ruined my life...need help!!!

Feb 4, 2020, 4:07:00 AM
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