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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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Blog Archive

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

Monday, September 9, 2019

Update MEBO Gut Microbiome Study

Click on icon
As we wait for the results from uBiome of Batch #4 of the MEBO Clinical Trial, Dynamics of the Gut Microbiotal in Idiopathic Malodor Production, which explores the microbial basis of systemic malodor and PATM conditions, Irene Gabashvili, PhD., Principal Investigator has written a few posts in her Aurametrix Blog, pointing out various findings as the study unfolds. In her previous posts, Irene observed epulopiscium and blastocystis hominis as potential culprits of conditions in MEBO sufferers. In her most recent post (Sep 4, 2019), she observes a third group of MEBO sufferers (only 10% of participants) with elevated levels of Alloprevotella group of microbes (see figure above), which seem to be making symptoms worse. "This bacteria is an oral bacteria associated with gingivitis and periodontal conditions..."
The Anna Karenina principle (AKP), in the context of metabolic disorders, would mean that an uncompensated deficiency in any one of important enzymes, or presence of any one of pathogenic microorganisms, dooms the person to having the MEBO/PATM symptoms.

We note that neither of microorganisms identified in our study is a true pathogen. These could be opportunistic microbes taking advantage of opportunities not normally available, such as weakened enzymes or disrupted gut microbiota. The microbes we see could be also symbionts of pathogens or indicators of inflammation and dysbiosis.
bhttps://aurametrix.com/blog/akpb

For more indepth explanation on Alloprevotella and the chart above, please refer to the post in Aurametrix.

Irene tells us that this gut microbiome study is the first to pursue the root cause:
Our microbiome trial is the first study where we can actually group participants based on the root cause, independently of their diets (unlike our Biolab and Wishart metabolome studies).

Full paper (Biolab), "Community-led research discovers links between elusive symptoms and clinical tests," on MEBO-Biolab study,Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis : NCT02692495

Full paper (Wishart), "Identifying subtypes of a stigmatized medical condition" on Exploratory Study of Relationships Between Malodor and Urine Metabolomics: NCT02683876


MEBO Dynamics of the Gut Microbiota 
in Idiopathic Malodor Production


This MEBO clinical trial is in its final stages of data analysis and will soon publish the conclusion. Meanwhile, the updates on findings by Irene Gabashvili, PhD., Principal Investigator, can be found in the following posts in the Aurametrix Blog:
  1. Alloprevotella: September 4, 2019
  2. Epulopiscium: August 19, 2019
  3. Friends and Stars: August 14, 2019
  4. PATM and TMAU: August 5, 2019
  5. Feeding microbiomes: July 21, 2019
  6. Blood type: June 2, 2019
  7. First 41 results: November 21, 2018
  8. Press Release: November 28, 2018
  9. What we hope to learn: June 27, 2018
  10. MEBO Microbiome Study: June 215, 2018
  11. Microbes of anti-social odor: March 14, 2018
  12. Crowdsourcing precision medicine: February 23, 2018
We are most grateful to uBiome for their very generous research grant and to Irene for her dedication and leadership in this research study.
María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

1 comments:

Jeanne said...

Are they working on a cure, with all of this research?

Sep 10, 2019, 11:35:00 AM
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