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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



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

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
Join/Watch the weekly
BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect TMAU

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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

Saturday, November 29, 2008

Conference Call Announcement from JMF

I posted a poem called "I'm alone inside", that i wish everyone would read. It's in the poetry and stories section. There are a couple of typos in it and i apologize. But i do want to enforce the fact that this is the way that i felt before i came to the site. I do get down ever so often, but now i can look forward to conference calls and the support line. i have found my release and i hope all of you who haven't used these tools would really try them. It's not good to stay all bottled up inside. It makes you more depressed, it makes you just feel like you want to die probably for just misplacing your keys, because we are so fragile because we endure such a hard life on a day to day basis. There is a womens conference call on Wednesday, December 3rd and i hope everyone attends and there will be a general group conference this Sunday, November 30th. Check Maria's blog for instructions. But i know i look forward to them even when i don't really talk, it's like hearing someone else tell my life, by telling there's and any new information and questions as well. I will be preparing something about my meet up with Maria i hope you all read.

I'm alone inside

I’m surrounded by people
But I’m always lonely
I want to reach out to the people around me
Reach out for support or help
But I don’t know how
I cry at night and wish for someone to hold me when I cry
I soak my pillow
Till my eyes become swollen, my head becomes sore, and my chest is heavy and full

I cry hours sometimes days at a time
I cry for myself and this life
I wonder why I must always go through something new
I cry and I release my burdens unto myself
I encourage myself

I tell myself everything I want to hear
It’s going to be okay
It can’t get any worse
I should not let the outside control my insides

I wonder why me
Why am I forced to live this way
To pass no day of just pure bliss
I cry because I’m afraid of tomorrow

Afraid of the people I will meet
Those that are not sensitive to the way I am
I don’t blame them
I’m disgusted with myself
But who carries the heavier burden
I can’t be like them

It’s so easy to bring attention to some ones short comings
For something someone else considers an easy solution
At times I don’t know how to coupe with this life
I know I need help
I know my burden is too heavy for me carry
That I feel like I can’t hold on anymore

So I continue to cry
As if crying should take away my pain and worries
My loneliness

I put on a façade
Pretend I’m happy
But all the time I’m dieing inside
Why me God
I’m dieing
I’m dieing of what seems an incurable disease
My heart aches

I’m like someone with no hope at all
Where is my salvation
I try so hard
As if being a better person will change my luck
But here I am
Still the same
In a pool of tears

I’m internally crying out for support
But I don’t know how
I open my mouth but the words can’t come
I need a solution
I need someone
Someone I feel comfortable to release my load unto

I’m so tired
I can’t carry any longer
I’m weak
I’m lonely

But why
When I’m surrounded
Why do the people who see me suffer
Not ask how I am
Why do they ignore my cause
Do I have to scream to get their attention
Do I have to cry out
I'm ashamed to express the way i feel

Should I jump off a building or run in front of a train
Before someone sees me for what I really am
Slowly dieing
Dieing alone inside.
I feel that because i'm ignored that i am to pretend that im normal
As if bringing the words to life that i can't go on pretending
Would be so pain staken to their reality
I curl into a ball so tight like a baby in a wound

I fear my reality
As they fear my reality
It pains them to see me the way i am
As it pains me to be this way

The truth is before us
I want scream
I can't hold it in anymore
I won't
I won't pretend
I'll shout from the heavens
I'm damage goods
And i can't be fixed me
I don't know if anyone can
At least any man
God can
But for some reason he won't
I don't understand it

I'm running out of encouraging words
I wonder if others have anything more or better
My fears of bringing the truth to life
And their fears of hearing it
Are an even playing field

I'm strong enough to open my mouth
But where is the person strong enough to hear me
I need that person
I want that person
Is that person out there
I refuse to be alone
I refuse to carry this burden
I refuse to go on with something that is beyond me

So i will search
I will search until i can't go on
Until i can find my release
I don't have a solution
But dammit i need a release.



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