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:
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

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

Monday, September 1, 2014

Writing testimonials in the RE(ACT) TMAU group

RE(ACT) Crowdfunding site especially for rare disorders including TMAU

Link to RE(ACT) TMAU group

RE(ACT) is a Swiss charity, part of the BlackSwan Foundation. It is a recently started website intended to allow rare disorders to raise funding for projects. In particular it wants to attract researchers to put forward projects which the public may then donate to. So far only one project has been put forward on the whole website and that only went live about 1 month ago. (pilot study for CMN disorder)

About posting in the RE(ACT) TMAU group
Sufferers can interact with researchers on the RE(ACT) website by posting their 'experiences' of their condition. This is the same concept as writing a 'testimonial' on the Rare Connect TMAU group page.

RE(ACT states about the idea behind the 'experience' pages :

  I am a patient and I want to meet other patients, is the RE(ACT) Community a Patient Network?
• Our community is principally addressed to researchers and to patients and/patients organization which are actively implicated in research projects. If you want to meet patients and share your experience we suggest you to use the Eurordis' RareConnect platform. The RE(ACT) Community encourages patients to share their knowledge and experiences on treatments or to provide other scientific observations  to researchers in order to give them a better understanding of the disease and help them in finding new treatments.

Donating to the RE(ACT) TMAU group
People can donate to the RE(ACT) TMAU group via paypal, either by being signed in or donating anonymously. 10% of the donation goes towards RE(ACT) admin costs. Perhaps over time this fee will drop. Any money given to the TMAU group will be kept in the general TMAU fund until a project is approved which will then be given any accrued money.

Signing up to the RE(ACT) TMAU group
Many people have said they have not been able to sign up to the RE(ACT) TMAU group. It seems that quite often the clarification email is in the spam folder, although sometimes does not arrive at all. RE(ACT) is in beta mode, and hopefully the bugs will eventually be ironed out.


Post a Comment