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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

MEBO Private Facebook Group
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
BannerFans.com
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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Blog Archive

Friday, September 7, 2018

Crissan Rosalia Mental Health Column: Anxiety Part 3

Anxiety Part 3



SEPTEMBER 2018

MEBO Mental Health Monthly Column
MEBO Mental Health Director
ANXIETY
Part 3
Prevention, Coping and Treatment
for Anxiety

In her July Mental Health Column, Crissan introduced and defined anxiety, stress and distress in malodor/PATM conditions. In her August issue of 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.

In Part 3 of this series, Crissan discusses the prevention, coping and treatment for anxiety, indicators of when to seek treatment, how to manage anxiety, and prevention and coping techniques.


Beck Anxiety Inventory


Burns Anxiety Inventory
In addition, Crissan provides us with the Beck Anxiety Inventory and the Burns Anxiety Inventory to assist us in determining the level of anxiety we experience. By clearly seeing and understanding these concepts, we can better understand ourselves, what drives us and what we can do to modify it so that we are more in control over our own lives.

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
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)


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Wednesday, August 29, 2018

MEBO's Mental Health Director - Interview with FOCUS, Netherlands

RAISING AWARENESS CAMPAIGN

The show will air on Dutch television on Wednesday September 19th. Herewith the link of the show: https://www.npostart.nl/focus/VPWON_1289481 the link is accessible internationally.
Our very own, Crissan Rosalia, MEBO Mental Health Director, Health Psychologist, MSc., has participated in a TMAU raising awareness short documentary in a scientific show in the Netherlands, FOCUS on NRT. NTR is a public broadcaster that makes special documentaries for targeted groups on nature, culture, health (especially misunderstood and misdiagnosed conditions), education, youth and diversity. Mr. Dirk de Bekker, Director NRT, was very moved by Crissan's portrayal of life with TMAU, and offered to do a short documentary with her, which she consented to.

...will be in Dutch without subtitles. However, the producer has promised to make a short compilation of the TMAU parts and they will provide this with English subtitles.
The show will air on Dutch television on Wednesday, September 19th. The link to the show is accessible internationally, https://www.npostart.nl/focus/VPWON_1289481, and although it will be in Dutch without subtitles, the producer has promised to make a short compilation of the TMAU part with English subtitles.

This short film, will also be made available to distribute online in order to raise awareness.
We are most grateful to Crissan for putting herself out there to raise awareness!

The following is Crissan's story of how this whole event came to fruition:

So a couple of weeks ago this was posted on Rareconnect and on Facebook:

Dutch film-maker seeks TMAU sufferer

Dirk de Bekker would like to contribute to raising awareness about Trimethylaminuria in The Netherlands, by making the story of someone dealing with TMAU in a very respectful way. Please contact the film-maker at the address below if you're interested: Dirk de Bekker Director NTR Dirk.de.bekker@ntr.nl 0031 6 28 14 27 53.

Dirk de Bekker is the producer of a scientific show in the Netherlands called Focus. This weekly show covers several topics which vary from nature, culture and health conditions (especially misunderstood and misdiagnosed conditions). The program is short, around 25 minutes but it is very informative.

Around the same time that the message was posted on Rareconncect and Facebook, the Dutch metabolic patient organization, VKS, arranged a meeting between me and this producer. After meeting mister De Bekker I have agreed to participate in this short documentary.

De Bekker has told me that he has received many emails from people all around the world who want to share their stories and contribute to the documentary (which is amazing :-). He was blown away and touched by the amount of people suffering from this condition and the difficult and isolated lives they lead. He was also saddened to hear about the the lack of acknowledgement and support from the medical community for this condition. He really wants to help raise awareness for this condition by making several documentaries.

In the future mister De Bekker hopes to produce a longer documentary solely on Trimethylaminuria, which is exciting. He also told me that he has been contacted by several international radio shows as well for interviews about Trimethylaminuria. So in the light of raising awareness for this condition, this is very promising.For the upcoming show they have interviewed a person with Anosmia (lack of functioning olfaction, the loss of a sense of smell) and a Trimethylaminuria sufferer (me) :-).

After a couple of interviews, August 27th was D-day, film day. Even though the show is only 25 minutes and they will cover many topics with regards to odor, filming took over 5 hours!!!! The presenter of the show seemed very moved by my story. The crew treated me well and they were very respectful and kind towards me. The shots will be edited and compiled shortly before the airing of the show (I haven't seen anything yet and also have to wait till the air date), so I'm very curious and excited about it. Hope they do a good job of portraying the core message of the story.

The show will air on Dutch television on Wednesday September 19th. Herewith the link of the show: https://www.npostart.nl/focus/VPWON_1289481

This link is also accessible internationally. Unfortunately the show will be in Dutch without subtitles. However, the producer has promised to make a short compilation of the TMAU parts and they will provide this with English subtitles. This short film, will also be made available to distribute online in order to raise awareness.

Even though this has been an emotional rollercoaster ( it feels like i'm bearing my soul to the world). I'm very happy to be able to do this and I also feel very strongly about the importance of "coming out" to raise awareness. I hope I did it justice and that I can encourage others to come forward and break the cycles of silence, shame and isolation. The more we can speak, share our stories, video's, articles and information on TMAU, the more awareness can be raised. In addition, I also hope that this will lead to more reasearch in the future, the discovery of a cure and the development of suitable treatment plans for TMAU and malodor patients.

Kind regards,

Crissan Rosalia

Crissan Rosalia
MEBO Mental Health Director,
Health psychologist, MSc.


A Public Charity
c.rosalia@meboresearch.org
takecharge@re-charge.org

In addition to raising awareness for our community, Crissan also write her Mental Health Monthly Column in this MEBO Blog. She is always available to sufferers in her very loving and compassionate way. We are so very appreciative and thankful to have you with us, Crissan! We are most blessed with you being among us as a fellow-sufferer and a true leader.


María


María de la Torre
Founder and Executive Director

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


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at no extra cost to you.
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Sunday, August 12, 2018

Dr. Hazen's 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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A EURORDIS and NORD Member Organization