MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect

TMAU Test through MEBO Research

MEBO Research International
TMAU Urine Test

SEE UPDATES HERE
$150 plus
shipping costs

for one test,

$250plus
shipping costs

for 2 tests over time.
TWO PAYMENT PLAN OPTION
Send email to maria.delatorre@meboresearch.org to arrange, AFTER filling out Requisition Form, please..
(supplied with test-kit)

TMAU Test
Results Form

sent via email

For Questions and Answers, see

MEBO's Interactive
Q & A Forum

Test analysis will normally occur in batches of 15 to 20

DATE: 23 OCT 2014
Now on : Batch #12
Samples analyzed since June 2012 : 223
Samples sold for Batch#12 not returned to MEBO : 20
Current samples received for Batch#12 : 16

Will ship 16 samples for Batch#12 to the lab on Monday, October 27, 2014.

Sonya's TMAU diet book

One of our group, Sonya McClinton, has written a 'low choline' recipe book. If you buy from Amazon through these links MEBO get a small % at no extra cost to the buyer


Amazon USA
38 sold

Amazon UK
14 sold
Don't have a kindle ? There are details on the right-side of the amazon pages how to download an app for smartphones, PC, or tablet. For Spain/Canada use the Amazon links in the left sidebar

tell others: send these links
Amazon USA : http://goo.gl/iisvYR
Amazon UK : http://goo.gl/mH2ZyN
BannerFans.com
RESEARCH DETAILS

DONATIONS THRU 30-SEP-2014:
£ 848.03/GBP
$ 513.00/USD

TOTAL at today's ROE
£0.62/GBP = $1.00/USD

£1,169.43 = $1,895.94

MEBO UK PAYPAL FOR TRINZYME

********
MEBO US PAYPAL FOR TRINZYME

Your currency will be automatically converted to USD or GBP by PayPal.

Option: pay with your credit card instead of PayPal account by clicking on either Donate button above.

Upcoming get-togethers

TMAU support group in Ormond Beach, Florida
contact Hilda at hpostell@rocketmail.com

Let us know if you want a meetup listed

Skype Group

International Skype group

Join through skype : username "Jo Jo"
members so far : 71
download skype (free version)
create a free account
Search for skunkhugsj : Make him a contact
Or ask anyone in the group to add you to group

Bi-Weekly Group Calls

USA : (712) 432 1620
access code : 391629#
NON USA : add 001 prefixGeneral Conferences: normally every other Sunday starting at 2:00pm - 4:30pm Eastern Time.

Note: can also be used anytime for unscheduled group chats

Free USA-based phone conferences (if you have a long distance call plan. Otherwise you will be charged as a long-distance call)

For USA-based : (712) 432 1620 then type the access code on your phone keypad: 391629#
Non USA : prefix above with 001 but check to see if it is free with your supplier

Record number of callers : 70+
If privacy is a concern, code your phone to PRIVATE mode
This phone line can be used anytime to talk to other sufferers
You don't need to talk. You can just listen

MEBO Community Outreach Program

Click here, Scroll down, Click on
"This belongs on CNN"
Cheryl Fields, Ph.D. (ABD)
MEBO Community
Outreach Director
Book uplifting seminars for free.

Click here for details and scroll downHome/Voicemail (785)-286-7005
email: cheryl.fields@meboresearch.org


Cheryl's CNN campaign

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Diaspora

TOTAL DONATIONS: $267.48 = £159.47 (30AUG14)
1st shipment to Kenya 3JUN14 $92.75/USD
2nd shipment to Ghana 15AUG14 $104.56/USD
3rd shipment to Kenya 19SEP14 $95.51/USD
SUPPLEMENTS FOR AFRICA DRIVE


MEBO US PAYPAL ACCOUNT


MEBO UK PAYPAL ACCOUNT


Friday, October 31, 2014

Inteview: What It's Like to Have Extreme Terrible Body Odor

Click on icon
A TMAU sufferer did an interview for New York Magazine, Science of Us, in which she describes what living with an uncontrollable odor condition is like. The article is called, "What It's Like to Have a Condition That Gives You Extremely Terrible Body Odor. The interviewee captivates her audience with her story as the reader gets a good feel of the life of a sufferer.

It takes a great deal of courage for a sufferer to take part in an interview like this.  Yet, sufferer after sufferer in multiple countries have mustered up the courage to do so because of the pressing need not only to raise awareness in an effort to minimize the social ostracism inflicted upon sufferers, but also to raise awareness in the scientific and medical society around the world to encourage research and appropriate medical treatment for this condition.


The following are excerpts from the article:

When were you formally diagnosed?

In 2007 I was researching my condition on the internet when I came across a support group run by someone in the U.K. who has TMAU. I discovered an entire anonymous network and a name for my condition. I think that community slowly pulled me out of the depression and encouraged me to go and get tested, which I finally did about a year ago...

I waited from 2007 to 2013 to actually bite the bullet and take the test. There’s a lot more research being done in the U.K. than there is here in the USA. There’s a clinic in Cleveland where the tests are conducted. I went through MEBO (a patient advocacy group for systemic body odor and halitosis), and they collected a batch of tests for me. They then send out frozen urine samples to the clinic. It takes about a month to hear back, and when I got the results … well, honestly, I was afraid to look at the results. I had mixed emotions, but when I saw that I had TMAU I just cried and cried. I felt validation for all that I had been through. I wanted to pick up the phone and call everybody and say, "See, this is why I smell bad. This is why I've been mistreated, this is a real condition, and it’s called trimethylaminuria!" It was liberating. It was also sad that I did have a name for the odor problem and that, yes, I really smell that bad... I found that I could control my odor through the diet. I gained my self-confidence and my life back! So getting tested was the best thing I ever did. I only wish I had done it sooner.

On behalf of our international MEBO Community, I would like to thank this brave woman for coming forward and telling our story.

Get new blog posts by email link


María de la Torre
Founder and Executive Director

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




SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.


A EURORDIS and NORD Member Organization 

Friday, October 24, 2014

New paper associates colorectal cancer with trimethylamine-oxide

Paper : TMAO and colorectal cancer
A new research paper by researchers at Cornell University have hypothesized that trimethylame-n-oxide (TMAO) may be associated with colorectal cancer. This would be the 2nd major disease to be hypothesized to be associated with higher TMAO levels. The other is heart disease, first postulated in 2012 by Dr Stanley Hazen et al at Cleveland Clinic.

Paper :  
Plasma choline metabolites and colorectal cancer risk in the Women's Health Initiative Observational Study : Link
Cornell University

How might this help trimethylaminuria ?  
For people who feel they have a metabolic malodor problem caused solely by trimethylamine, now that TMAO has been associated with 2 major diseases in humans, it is likely that much research will now take place regarding trimethylamine in humans, and possibly how to prevent or neutralise it. So TMAU patients are likely to be a big benefactor of this research.

TMAO and TMA
Trimethylamine-n-oxide (TMAO) is oxidized trimethylamine (TMA). Trimethylamine in humans is thought to be generated solely from any TMA or TMAO ingested (e.g. fish), or by gut flora altering TMA precursors in the diet (such as choline and carnitine). In healthy humans the TMA is oxidized by FMO3 enzyme into TMAO and then excreted. You would think that TMAU people would not have high TMAO levels (and so less likely to be exposed to a hypothesized Heart Disease or cancer risk), but in many cases it seems TMAU people have both high TMA and TMAO levels. Keep in mind the connection to these 2 major diseases is not the consensus (yet).       

FMO3
While they are likely to be looking at ways of reducing/blocking TMA, at the moment we do not know if they will take an interest in FMO3 enzyme and it's proper functioning as well. Currently FMO3 is a 'mixed function oxidase' enzyme generally regarded as a 'negligible' player in the grand scheme of enzymes in the body, although this is likely an underestimation. However, if they stop/reduce/neutralise TMA then they may not feel it necessary to look at ways to make FMO3 function properly. Only time will tell.

However, it is hoped that now there will be plenty of research around the world at how to lower TMA in humans. 

Wednesday, September 24, 2014

Treatment Access 2014 Campaign

The European Organisation for Rare Disease asked MEBO to invite members of our community to report difficulties in accessing care before 30 September 2014 by filling out their anonymous questionnaire. Concise, short and accurate answers are preferred. Please be a participant in this campaign. Below is the message MEBO received from EURORDIS asking for volunteers.


Click
https://www.surveymonkey.com/s/H2SM3P9


The 2014 campaign ends in a few days 

Invite your members to report difficulties in accessing care 

before 30 September 2014!

Treatment
Access Campaign!



Are you facing difficulties accessing your treatment? Please report them to us
We would appreciate if you could take a few minutes to complete this anonymous questionnaire. Concise, short and accurate answers are preferred. Please take your time.
The collected data will be processed by trained staff in order to point out (via the reports which will be available) the existing problems to the National Health authorities and engage in a dialogue with them. We do not have the resources to respond to individual cases.
We will not communicate the results directly to you, but you will be able to read the outcomes of this campaign on the EURORDIS website (a specific "Access Campaign" page will be created). Thank you for your time. 

EURORDIS
EURORDIS - Rare Diseases EuropeFounded in 1997, the European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of organisations and individuals active in the field of rare diseases in Europe. EURORDIS represents over 600 rare disease patient organizations in more than 50 countries, covering more than 4000 rare diseases (for more information: www.eurordis.org

Click

https://www.surveymonkey.com/s/H2SM3P9

François Houÿez
+331 56 53 52 18
Director of Treatment Information and Access
European Organisation for Rare Diseases
www.eurordis.org 



María de la Torre
Founder and Executive Director

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




SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.


A EURORDIS and NORD Member Organization