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

MEBO survey for Dr Hazen click here
Read more/less

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

MEBO Research Clinical Trials

Friday, May 25, 2012

Dr. William Gahl and NIH Undiagnosed Diseases Program


There are over 6,000 Rare Diseases and these affect up to 25 million Americans. They are defined by law as disorders that affect fewer than 200,000 each...there are only a few hundred treatments for these [because]...it's not profitable for pharmaceutical companies to invest in a disorder that involves only 20 people, 50 people, or even 500 people...
We have potential treatments that make sense, that have presumably very few side-effects, and yet, we are not allowed to use them...The Food and Drug Administration ensures the safety of our foods and of the drugs that come to us...but there is one issue, for rare diseases, they apply the same criteria for the use of an investigational drug as they do for common diseases.
FDA: Ensures Drug Safety
People with rare diseases deserve
the same protection as othe human subjects.

Dr. Gahl proposes a change to this FDA's policy,

FDA: Ensures Drug Safety
People with rare diseases deserve
the same protection as othe human subjects.
Risk vs. Benefits?

Some diseases are so rare that there is no financial incentive for pharmaceutical or biotech companies to seek cures or treatments. That leaves physicians like Dr. Gahl without the assistance of research normally performed by profit-seeking pharmaceutical companies. Since FDA does not approve the use of medication on any patient without first having gone through a very expensive research protocol, these potentially effective treatments cannot be administered to rare disease patients, who then go untreated and at times face certain death.

"People in the Rare Disease Community want to be protected, but don't want to be protected to death."
Dr. Gohl
http://www.cbsnews.com/video/watch/?

0 comments:

Post a Comment