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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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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

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

This is a GOOGLE FORMS survey

short url for survey :

current participants : 113 (update 18dec20)

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.


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