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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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
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Blog Archive

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Saturday, April 14, 2018

Raising Awareness about PATM

It is MEBO’s aim to allow its members from around the world to have a voice and the opportunity to tell their story to the world. For this reason, the MEBO Raising Awareness Campaign was created. This video is made by a young university student in the Middle East, who wants the opportunity to comment on the study carried out by Professor Yoshika Sekine and his team of researchers (2018). The graphs shown in this video taken from Professor Sekine’s Slideshow presentation for the MEBO Conference clearly show the presence of chemicals and microbes found on PATM subjects.

In this video, Muhammad also addresses Olfactory Reference Syndrome (ORS), which many in the medical community resort to, for lack of research to form a more targeted diagnosis. It is for this very reason that the American Psychiatric Association (APA) listed ORS in the Appendix for Further Research classification. It is now classified as “an Obsessive Compulsive Spectrum Disorder with a strong anxiety component. As such, it belongs in the new Anxiety and Obsessive-Compulsive Spectrum Disorders category,” says Dr. Jennifer L. Greenberg, Psy.D., with the Massachusetts General Hospital and Harvard Medical School., who studied our MEBO community in 2010. This classification now calls for mental health therapy for body odor and PATM sufferers to be focused on treating the anxiety and obsessive-compulsive disorder that comes with having these conditions, as opposed to being administered medication for delusional symptoms, in order to help sufferers become functional members of society.


While many delusional patients are treated with antipsychotics, Greenberg said, "What we are starting to think more about is that the disorder presents like disorders that are closer to obsessive compulsive disorder.

This MEBO member who suffers from PATM Syndrome, represents a large sector of the MEBO population who have observed how those around them, and in some cases their own children, experience allergic reactions when they are near the PATM sufferer. “It’s like ‘the cat’ entered the room, and my kids start to sneeze, get teary eyed, when they get near me, and then their symptoms stop when I leave! I am their father, and I want to be able to be with them without inflicting these symptoms on my own kids!” says a PATM sufferer.

Thank you Muhammad for telling your story and representing the whole PATM community around the world.


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)
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A EURORDIS and NORD Member Organization

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