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MEBO - UBIOME study 2018

NCT03582826
ClinicalTrials.gov
MEBO Gut Microbiome Study
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

Participation info : LINK English

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to join : go to
or contact
Ubiome Gut EXPLORER : 10% OFF
Join/Watch the weekly
TMAU UP Podcasts

Videos : TMAU stories

MEBO Map Testing & Meetups


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

DONATIONS THRU 31-NOV-2016:
£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

MEBO UK PAYPAL FOR TRINZYME

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Sunday, August 12, 2018

Cleveland Anti-TMA pill works in mice

CLEVELAND CLINIC work on a 'TMA-inhibitor' pill continues.
New paper released on Aug 6 2018.
Pill worked on MICE.

Regular readers will know that CLEVELAND CLINIC HEARTLAB published a theory in 2011 that TRIMETHYLAMINE-OXIDE is a main factor in causing CARDIOVASCULAR disease.

An obvious therapy would be to block TRIMETHYLAMINE production in the gut.
The biggest source of TMA in most humans is likely to be from degradation of Choline and Carnitine in the gut by gut microbes.

Cleveland Heartlab looked for a way to stop gut microbes creating TMA, and have been working on this since 2011.

LATEST NEWS
Cleveland published a new paper on August 6 2018.
New paper says they have now have compounds that fit into a pill that will INHIBIT TMA formation in the gut from Choline/Carnitine by gut microbes ... and the news is it works on MICE.
Human trials will follow.

Quote
 ... now have something that fits in the size of a pill and will completely suppress TMA production.
The compounds in this manuscript work 10,000 fold more potent than DMB

OUR UNDERSTANDING OF THE 'ANTI-TMA' PILL
The pill has a number of compounds similar to TMA in structure (analogues).
The gut microbes absorb these compounds rather than TMA.
In effect 'tricks' the TMA enzymes of the microbe, and fills up that quota ?
Microbes normally 'cleave' the TMA from choline/carnitine, via cutC enzymes (?)
The bacteria are not killed, it just interferes with the microbes enzymes that cleave TMA from choline.

PREVIOUS KNOWLEDGE OF THE 'ANTI-PILL' 
The pill will be an 'OVER THE COUNTER' supplement.
No prescription necessary.
The date of marketing is unknown. Could be 2020 or further.
There seems to be a patent for the pill taken out circa 2017. It looks to be a combo of DMB and other natural compounds that are similar in structure (analogues) to choline/carnitine.

HOW WILL IT AFFECT TMAU people ?
If there is no TMA in the gut, there is no TMA to absorb in the blood.
So in effect, it may be a 100% therapy for TMAU.
It will not improve FMO3 function.
Kind of like an alcoholic with no alcohol. As long as they have no alcohol they are 'cured'. 
Presumably it has no effect on TMA sourced from FISH in the diet. So fish would still be off the menu.

For those who feel TMA IS THE ONLY SOURCE of their malodor, it would be in effect a wonderful therapy.

WHAT HAPPENS NEXT ?
A hope is that the pill is on sale on 2020, but this is a guess and it may be a few years more than that.

The pill is for the Heart Disease / Stroke market, so it will definitely be made. 

Cleveland Clinic used to supply MEBO with a TMAU urine test from 2011 - 2017, but it sadly had to end.

Links :
Abstract of paper : TMA-INHIBITOR IN MICE
CLEVELAND CLINIC blog article
PRESS RELEASE
CLEVELAND CLINIC NEWSROOM

Patent for the anti-TMA pill ? : link



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Friday, August 10, 2018

TMAU Petition to CDCP : Change.org

Karen is a longtime MEBO Volunteer Helper.
She wishes to remind us of a petition on change.org for TMAU, started by Rere.

Change.org petition.
About : AWARENESS FOR TMAU 
To :  Centers for Disease Control and Prevention
Begun : 2016

Link to TMAU Petition

The petition link is also on the Blog Sidebar. >>>>
It has 500+ signees, again suggesting TMAU is not rare.


Rere talking about her TMAU petition on Change.org


Petitions as an awareness tool.

Petitions would seem a very useful tool for an unknown disorder such as METABOLIC BODY ODOR.
They show how many identify with this disorder.

A petition can go to anyone (many petitions are better than none), and over time it may become clear who best to target and the aim(s) :
People could start petitions to :
Politicians, Political bodies, Government agencies, Academic bodies etc.

Change.org seems to be the most popular and established world petition site.
There are also petition sites to country parliaments, such as UK petition site 

MEBO will be happy to promote any petitions 
start a petition on Change.org

Saturday, August 4, 2018

Crissan Rosalia Mental Health Column: Anxiety Part 2

Click on icon to see paper



AUGUST 2018

MEBO Mental Health Monthly Column
MEBO Mental Health Director
ANXIETY
Part 2
Causes, symptoms and diagnosis
of the different types of anxiety
in malodor and PATM patients

Misdiagnosis is very common, due to the incorrect focus and observations of the professional. They discount or have not been able to detect the odor symptoms which can lead to diagnosis with a wrong label.
In her July Mental Health Column, Crissan introduced and defined anxiety, stress and distress in malodor/PATM conditions. In this Part 2 of 3 topics on anxiety, Crissan spotlights the various manifestations of anxiety in the life of a malodor and PATM sufferer, and she portrays factors contributing to the development and intensity of the variety of anxiety disorders. She discusses in a very relevant manner the development process and expression of anxiety in sufferers of these conditions, which include Panic Disorder, Social Phobia, Obsessive Compulsive Disorder (OCD), Post Traumatic Stress Disorder (PTSD), and Generalized Anxiety Disorders.

Her most interesting conclusion, which is very specific to our community, is that these psychological symptoms of anxiety are not solely based on psychological component, but rather due to the presence of a medical and metabolic condition. She adds, "Misdiagnosis is very common, due to the incorrect focus and observations of the professional. They discount or have not been able to detect the odor symptoms which can lead to diagnosis with a wrong label."

It is also possible that anxiety symptoms are not solely based on a psychological component, but that these symptoms may arise due to the presence of a medical and metabolic condition such as Trimethylaminuria. More research is needed in this area. Some patients have also reported having other conditions, such has heart disease, Diabetes, Asthma, Sjogren’s syndrome and IBS besides Trimethylaminuria which are also correlated to anxiety. Professionals should be careful when diagnosing patients, a more suitable diagnosis might be anxiety due to a medical condition. This implies that the medical condition is the primary condition and the mental symptoms are secondary.

...This implies that the medical condition is the primary condition and the mental symptoms are secondary.


Our most sincere gratitude goes out to Crissan, our MEBO Mental Health Director, for her ongoing dedication to our community!


María



María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
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