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

Tuesday, October 20, 2015

Possible hospital-led TMAU support group in Dublin

It looks like Dr Eileen Treacy may be setting up a TMAU support group in Ireland, based at the Dublin Hospital she works at. Dr Treacy has a long history of being interested in TMAU.

A forum poster posted about this potential support group in Dublin on the forum today
Forum post about Dublin TMAU support group

This would be the first known TMAU support group arranged by healthcare workers and would be a much welcome thing at all hospitals (as few as there are) who help TMAU patients.    

Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner


Anonymous said...

The Queen Elizabeth Hospital in Birmingham (UK) has an Inherited Metabolic Disorders department that sees TMAU patients, and when I went to my last appointment a month or so ago, the consultant said that a psychologist would be joining them in the new year and s/he would start a support group that I could then attend.

If anyone lives near Birmingham, it's worth asking your G.P to refer you if you have TMAU as they do the urine tests, and while there is nothing they can do, other than give the general advice that is out in the public domain, they can check in with you periodically and I guess it raises the profile that there are more people. There is also a specialist nurse, pharmacist and dietician as part of the consultation appointments, so worth going for sure if you have TMAU and can get a G.P to refer you.

Oct 20, 2015, 2:59:00 PM
Maria de la Torre said...

Thank you very much for this information. Is it alright if I write a post about this, so that others might find this information more quickly?

Oct 20, 2015, 3:30:00 PM
Anonymous said...

Hi Maria,

Yes of course, please do. The consultant Endocrinologist at the Queen Elizabeth is Dr Tarekegn Hiwot in the Inherited Metabolic Disorders Outpatients Clinic, Queen Elizabeth Hospital, Birmingham, B15 2WB.

It would be useful if people who have the condition are referred if eligible by location as it will raise the profile and legitimise how people are feeling, as well as allow testing. Urine tests are sent to the Sheffield Hospital by the Queen Elizabeth.


Oct 24, 2015, 3:43:00 PM
Post a Comment