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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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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
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EURORDIS and
NORD Member Organization
See RareConnect

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Blog Archive

London TMAU meeting with Prof Liz Shephard
19th Oct 11am - 1pm
St Mary's Hospital
Praed St, Paddington
London W2 1NY
click to read more
more details : karen.james@meboresearch.org

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

Friday, October 31, 2014

Inteview: What It's Like to Have Extreme Body Odor

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A TMAU sufferer did an interview for New York Magazine, Science of Us, in which she describes what living with an uncontrollable odor condition is like. The article is called, "What It's Like to Have a Condition That Gives You Extremely Terrible Body Odor. The interviewee captivates her audience with her story as the reader gets a good feel of the life of a sufferer.

It takes a great deal of courage for a sufferer to take part in an interview like this.  Yet, sufferer after sufferer in multiple countries have mustered up the courage to do so because of the pressing need not only to raise awareness in an effort to minimize the social ostracism inflicted upon sufferers, but also to raise awareness in the scientific and medical society around the world to encourage research and appropriate medical treatment for this condition.


The following are excerpts from the article:

When were you formally diagnosed?

In 2007 I was researching my condition on the internet when I came across a support group run by someone in the U.K. who has TMAU. I discovered an entire anonymous network and a name for my condition. I think that community slowly pulled me out of the depression and encouraged me to go and get tested, which I finally did about a year ago...

I waited from 2007 to 2013 to actually bite the bullet and take the test. There’s a lot more research being done in the U.K. than there is here in the USA. There’s a clinic in Cleveland where the tests are conducted. I went through MEBO (a patient advocacy group for systemic body odor and halitosis), and they collected a batch of tests for me. They then send out frozen urine samples to the clinic. It takes about a month to hear back, and when I got the results … well, honestly, I was afraid to look at the results. I had mixed emotions, but when I saw that I had TMAU I just cried and cried. I felt validation for all that I had been through. I wanted to pick up the phone and call everybody and say, "See, this is why I smell bad. This is why I've been mistreated, this is a real condition, and it’s called trimethylaminuria!" It was liberating. It was also sad that I did have a name for the odor problem and that, yes, I really smell that bad... I found that I could control my odor through the diet. I gained my self-confidence and my life back! So getting tested was the best thing I ever did. I only wish I had done it sooner.

On behalf of our international MEBO Community, I would like to thank this brave woman for coming forward and telling our story.

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María

María de la Torre
Founder and Executive Director

A Public Charity
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