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

Wednesday, October 30, 2019

Prof Shephard London TMAU meeting 19/10/19 : update and summary

Long-time FMO3/TMAU researcher, Dr Elizabeth Shephard, hosted a TMAU community discussion on 19 Oct 2019 in London.

Here is the approved version of the meeting summary :

Meeting with Dr, Azara Janmohamed and Professors Elizabeth A. Shephard, and Ian R. Phillips
19.10.19. at St Mary’s Hospital.

We discussed:

 The issue of disability rights for odour sufferers, including those odour sufferers without
diagnoses. The goal is to acquire disability status for all odour-producing disorders. The
starting point to achieve this is an application to the Halley Stewart
Trust .
If successful, the Trust will fund a post for a research associate who will conduct interviews/written surveys with the community. With quantitative evidence of discrimination in the workplace/social inequality etc, the backing of Halley Stewart Trust, and support from UCL, we hope to establish an All Party Parliamentary Group to represent TMAU/metabolic odour disorders and effect change via MPs. The outcome of this application will be known only in about 5 months time.

 The possibility of liaising with other researchers to talk about their findings on volatiles other
than TMA; of exploring a new test; of discussing possibilities for blood or urine tests. Test
accuracy should be the focus of any test procedure.

 The idea of producing a leaflet specifically for patients to take to GP consultations. Liz
Shephard suggested brief info/bullet points that are informative but brief. The draft
leaflet would be shown to a group of clinicians to ensure they felt it contained sufficient
informative information. The final leaflet would then be prepared.

 The problematic lack of communication between the different clinical specialities involved in
managing metabolic odour disorders (eg. Endocrinology is just one department). The lack
of communication between specialities impedes progress.

 The idea of investigating the relationship between stress and odour, but this would be
difficult because it would be unethical to deliberately cause psychological stress to the

 The idea of making a video, using actors, to recreate a scenario of odour discrimination.
It was decided that:

 The ‘fish odour’ misnomer should be requested to be removed from the NHS website.

 A list of consultants with experience of working with patients with TMAU should be collated

A summation may be, that a grant request to hire a researcher to gather evidence testimonials of TMAU has been put forward to the Sir Halley Stewart Trust. The request will be considered around February 2020.

get New Posts by EMAIL : Enter your email address :

A EURORDIS and NORD Member Organization


Post a Comment