Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out
March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


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

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Wednesday, March 12, 2014

Message from Founder and Executive Director

MEBO RESEARCH FOUNDER
AND EXECUTIVE DIRECTOR

Many sufferers call the MEBO phone line or email me personally in hopes to receive expert consultation and advice. Please be informed that I am not an expert, and for this reason, I am not available or qualified to give one-on-one counseling to sufferers. This role or function was never my intention when I founded MEBO simply because I am not qualified to do so. As a complement to my Intro Letter post of April 10, 2008, I would like to clarify my position and role in MEBO Research as the Founder and Executive Director.

Since I am not available or qualified to give one-on-one counseling to sufferers, and since MEBO consists of a fully volunteer staff of sufferers and family members, there are no experts available to offer telephone consultations or available to answer large volumes of emails.
As noted in my Intro Letter, I am a mother of a Primary TMAU sufferer who has responded very well to the TMAU odor-management protocol. It is precisely because of my son’s condition that I founded MEBO Research with the sole purpose of promoting research to find a better more reliable treatment, and ultimately a cure. There is no cure at the present time and experts do not foresee a cure in the near future. We can only hope for a better, more reliable treatment to come out of the research currently underway in the United Kingdom and the United States. In the meantime, since Secondary TMAU was not being tested in the US, I found it beneficial to start the MEBO TMAU Test Program.

Since I am not available or qualified to give one-on-one counseling to sufferers, and since MEBO consists of a fully volunteer staff of sufferers and family members, there are no experts available to offer telephone consultations or available to answer large volumes of emails. Therefore, MEBO has gone to great lengths to interviews experts, work with RareConnect to hold webinars given by experts, and to gather literature on Trimethylaminuria and other body and breath odor conditions found in professional journals to post about them in the MEBO Blogs.

In addition, I have put in place a secret, totally private online support group, which consists of a few hundred members that is thriving very well. No one outside the group can see participants’ names, usernames, or pseudonyms associated with MEBO or anything written in this site. In this group, there are sufferers who have many years of experience fine-tuning their respective odor-management techniques, who are very willing to give excellent testimonial to each other and to new members. The topics most discussed in this group are the expert-prescribed odor management protocol and recommendations, and how to face the challenges of school environment and the workplace among other topics. I’ll be happy to invite anyone interested to this group for help and guidance. If interested in being invited, please notify maria@meboresearch.org.

REFERENCES:

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


get New Posts by EMAIL : Enter your email address :



A EURORDIS and NORD Member Organization

0 comments:

Post a Comment