Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Monday, February 20, 2012

Quality of Life with odor condition Study


Since his inception on January 5, 2012 into the directorship of MEBO Research in the UK, Dr. Colin Harvey-Woodworth, BDS, has begun a Health Related Quality of Life Study in which he attempts to depict the psychosocial trauma that body odor conditions produce. As noted in his introductory post in this blog, he states, "I believe that malodour conditions need to be considered together because they are alike in their social unacceptability, with all the psychological co-morbidities that this usually implies for the sufferer."

Below are excerpts from this study:



Human beings have odor, this is ubiquitously true and can most definitely be considered normal. The current view of society towards human odor has been shaped by hundreds of years of pressure on consumers by profit driven advertising campaigns. Thus, these normal attributes have become something disgusting, abnormal, uncivilized and unhygienic in the mind of the average person. These topics have become taboo, and there is stigma attached to smelling of sweat or having physiological genital odor. Even though all human being smell, they do so to varying degrees. There is a spectrum of normal variation.

The complaint of malodour can be thought of as a summation of physiological odours, and possibly pathological malodour(s), all of which may need to be considered for successful management.
What is physiological can thus be viewed by the individuals themselves or by those around them as abnormal and in need of management. It is difficult to estimate the boundary between what is perceived to be normal and what is considered abnormal. This is likely to be highly subjective, with possible variables such as ethnic group, age, gender, personality type, social status, occupation and cultural factors. This document aims to apply a methodical approach to all patients with a complaint of malodour, including a clinical evaluation, which attempts to identify the issue of an overly sensitive patient with no provable pathological odour...


with patients who have a pathological malodour condition, treatment may also be indicated for other sources of physiological odor even though in isolation these are within normal limits.
Colin makes an excellent point about how a person can have a borderline negative test, such as the TMAU test, and if also has borderline negative results in other volatile organic compounds (VOCs) tests, it would seem to suggest that the person may not have a body odor condition. However, the combination of these (borderline) odorous compounds can indeed produce a "strange" odor, that may not be simply fish odor, or sulfur-like rotten egg odor, but rather more typical odors that come from a mixture of chemicals such as those found in garbage dumps, sewers, feces, etc.


As discussed in the section ‘the physiology of malodour detection’, volatiles need to exceed a certain threshold for the average person to be able to detect them. Thus in patients with multiple sources of high-normal physiological odours, the total volatiles produced may exceed the socially acceptable threshold. Similarly, with patients who have a pathological malodour condition, treatment may also be indicated for other sources of physiological odor even though in isolation these are within normal limits. The complaint of malodour can be thought of as a summation of physiological odours, and possibly pathological malodour(s), all of which may need to be considered for successful management.


We ask that all our readers consider participating in this program by filling out the survey, once it becomes available, as MEBO Research commits to protecting the privacy of all participants.
Dr. Harvey-WoodWorth is currently designing a survey that he hopes our international community will participate in to best depict the physical manifestations of body odor conditions, including test results, and the psychological impact it has on sufferers, as well as the social consequences, including personal relationships and employment. We ask that all our readers consider participating in this program by filling out the survey, once it becomes available, as MEBO Research commits to protecting the privacy of all participants. It is Colin's hope to publish this study when concluded in medical/scientific journals.

From time to time, I will be posting excerpts from this study, which is currently 33 pages long, so that the community can become informed of its in-depth and thorough process. It is hoped that sufferers will become familiarized enough with this effort to inspire trust and a desire to be a part of this project through participation.

María

halitosis research
María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

body odor petition
MEBO Research

0 comments:

Post a Comment