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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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Wednesday, September 19, 2018

TMAU MEBO Director on Dutch TV ... New TMAU Youtube video

MEBO Mental Health Director, Crissan Rosalia, Health psychologist, MSc., appeared on Dutch TV tonight on a program about smells.
Her part was to talk about living with TMAU.
In it she talks of smelling of manure, cigarette smoke, poop, garbage (typical smells the TMAU community identify with).

The full program may be available sometime (includes the story of a lady with anosmia).

The program makers have kindly issued a shorter TMAU video of the program to their youtube channel.

We are grateful to Crissan for being so brave, and the program makers for taking an interest and promoting awareness of TMAU.



Crissan not only very proactively raises awareness about TMAU, but she also dedicates herself to help sufferers cope emotionally with living with this condition. She writes a monthly Mental Health Column in this blog with her professional views on coping and understanding.

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MEBO chat with NIH ORDR office :details to follow

Details will follow soon of :
MEBO web conference with NIH ORDR dept team.
Tue 18th Sept

Info given after the chat :

Thank you for speaking with us earlier today. In follow-up to our conversation, here are links to some of the programs and resources we spoke about.

RDCRN (Rare Disease Clinical Research Network) Funding Opportunity Announcement - https://grants.nih.gov/grants/guide/rfa-files/RFA-TR-18-020.html

Toolkit for Patient Focused Therapy Development - https://rarediseases.info.nih.gov/toolkit

R13 Grants (Support for Conferences and Scientific Meetings) - https://grants.nih.gov/grants/funding/r13/index.htm

All of Us Research Program - https://allofus.nih.gov/

Registries Program (RaDaR): https://rarediseases.info.nih.gov/radar

Additional registry information outside of NIH:

NORD (National Organization Rare Disease) - https://rarediseases.org/iamrare-registry-program/
Sanford CoRDS (Coordination of Rare Diseases at Sanford) - http://www.sanfordresearch.org/specialprograms/cords/

Additional info given :

Thank you for the time to talk to us about TMAU yesterday.

In terms of drug development for TMAU, given the available knowledge of the TMA metabolism, it seems possible that small molecules could be developed to modulate TMA levels.

The attached PDF entitled TMA inhibitor is an example that I found.

You may have seen this, but It turns out that the same approach has implications for treating heart disease, so there is already drug development ongoing

https://newsroom.clevelandclinic.org/2018/08/06/potential-new-class-of-drugs-developed-at-cleveland-clinic-may-reduce-cardiovascular-risk-by-targeting-gut-microbes/

There may be other labs or companies working in the same area, so this is not intended to be a complete list.

Along the same lines, another possible therapeutic strategy that is worth considering would be breaking down or trapping TMA.

While gene therapy to the liver is theoretically possible, it seems unlikely at the moment given the serious risks of gene therapy, and since TMAU is not a life threatening disease.

An alternative that could be considered is using genetically modified microorganisms in the gut to do the same things.

These links discuss some examples of that strategy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4049937/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4666514/

Here are two companies working in this area that I know of;
there may well be more

https://www.synlogictx.com/
https://aobiome.com/

As I mentioned yesterday, this information is not an endorsement of any company; just some ideas for you to consider and discuss with your scientific and medical advisors.

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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
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