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

Tuesday, January 31, 2012

THE POWER OF PARTICIPATION IN SURVEY STUDIES


THE POWER OF SUFFERER PARTICIPATION
IN SURVEY STUDIES


On January 11, 2011, the American Psychiatric Association revised and updated the DSM-5 Development category of Olfactory Reference Syndrome, as noted on their website. See article, "DSM-5: What's In, What's Out". This online page was copyrighted in 2012 with these latest revisions. The most significant highlights of these changes are the following declarations:


The preoccupations are not restricted to the symptoms of another mental disorder (e.g., the delusions of Schizophrenia or another Psychotic Disorder)...
There appears to be some overlap with delusional disorder, social phobia, body dysmorphic disorder, OCD, and hypochondriasis, but ORS appears to have important differences from all of these disorders.
ORS’s current classification is problematic, as this syndrome appears to characterize a distinct and suffering group of people who may be misdiagnosed or unsuccessfully treated because ORS is not clearly identified in DSM...
Including ORS in an Appendix would potentially stimulate further systematic research, using specified diagnostic criteria.
2012 American Psychiatric Association


Because some members of our community stepped up to the plate to fill out the survey...we not only brought about significant changes to the way sufferers are now diagnosed...
I wrote a post in this blog only a few days before this APA website was updated expressing my profound pride in our community for having been instrumental in bringing about these changes. Because some members of our community stepped up to the plate to fill out the survey we were invited to participate in by Dr. Jennifer L. Greenberg, PSY.D., of the Massachusetts General Hospital and Harvard Medical School, we not only brought about significant changes to the way sufferers are now diagnosed, but we actually tapped into the conscience of these experts to assist us in stimulating further systematic research, as noted above. All this change with only the participation of a very small percentage of our community.

...but we actually tapped into the conscience of these experts to assist us in "[to] stimulate further systematic research."
Imagine what we could do with mass participation from all sufferers in our international community! We have the wherewithal to make changes that will change our lives! We just need to say,
"yes, I will"
when the opportunity to participates knocks on our door.


MEBO Research is organizing a series of survey-based research studies that we plan to use to "potentially stimulate further systematic research," as stated on the DSM-5 Classification, into not only the psychosocial quality of life these conditions bring about, but also into the physiological causes and treatment of malodor conditions.

In an effort to support our upcoming testing and research programs, MEBO is currently going to great lengths to set up the required privacy protection of participants by establishing an Institutional Review Board (IRB), also known as an Independent Ethics Committee (IEC), or Ethical Review Board (ERB), that will be formally designated to approve, monitor, and review biomedical and behavioral research involving humans. We are also in consultation with a HIPAA attorney, (aka solicitor in UK) to assure that we will have taken the proper legal measures to ensure the protection of the study participants. See the Health Insurance Portability and Accountability Act (HIPAA) as explained by the U.S. Department of Health & Human Services.


So all sufferers from around the world need to ask themselves, do I want to remain a helpless victim, or do I want to empower myself to change the course of my life? Could I be a part of the solution for myself, my children, and their children, so that no one else will ever have to suffer as all persons with this condition have suffered throughout history.

More information about MEBO's survery studies will be forthcoming very soon. We hope to make a difference. Please stay tuned.

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

5 comments:

Angelina Marshall said...

This post is different from what I read on most blog. And it have so many valuable things to learn.
Thanks for the sharing of such information we will pass it on to our readers.
Sample Survey Questionnaire

Jan 31, 2012, 6:43:00 AM
Anonymous said...

Interesting times, already you are making progress and hopefully together we can all make more!

Feb 1, 2012, 7:11:00 AM
Lorenzo said...

Hi, Everyone my name is Lorenzo and I have had Halitosis for 6yrs now and wanted to meet with someone who has Halitois or TMAU or any other body oder issues to hang out with and stregthen each other. I live in Minneasota, Lets try to find answers together in a systematic way and have fun together.Ok stay strong contact me LorenzoPMorgan@yahoo.com

Feb 6, 2012, 3:29:00 PM
Maria de la Torre said...

Hi Angelina,
I'm sorry I didn't see your comment until now. It was lost in a moderation limbo somewhere because I had not seen it.
Thank you for your comments. The link is very interesting. Thanks again.
María

Feb 21, 2012, 8:07:00 PM
Maria de la Torre said...

Lorenzo, Thanks for reaching out to other sufferers to create a support group in your area. If more people reached out to other sufferers and to organize together to look for solutions, we would have a better shot at finding one.

Aug 16, 2012, 6:09:00 PM
Post a Comment