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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

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


Participation info : LINK English

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



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

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
NORD Member Organization
See RareConnect TMAU

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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

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]'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


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