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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

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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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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, January 30, 2019

UK MP will write to Health Minister about TMAU

A UK MP will write to the UK Health Minister about TMAU.

rareconnect TMAU forum member tmauuk has been very active in contacting people, organisations and companies who may be able to help the TMAU cause. This includes politicians (recommended for everyone try, e.g. contacting local representetives about TMAU).

In the UK the political system is set up thus :
1. Each contituency elects an MP.
2. Biggest party forms the Government.
3. Leader is PM.
4. PM appoints Ministers.

tmauuk reply from an MP on TMAU
tmauuk wrote to an MP and this was the reply (permission given to post this) ...

Thank you for taking the time to inform me about Trimethlymauria ( TMAU ). I have tabled a written question on your behalf !

To ask the Secretary of State for health and social care, what assesment he has made of the adequacy of Funding into research into methods A) Treating B) Curing Trimethlymauria.

I will of course let you know the answer.

I shall further consider how I might help you in raising awareness of this condition after receiving the sos reply!

Please keep my informed about any more developments and Thank you again for bringing this to my attention.

This is a milestone in the history of Metabolic Malodor disorders, as currently 99.999% people have not heard of it, and the health systems do not care.

It is recommended to write to politicians, as they put pressure on the health systems management.

link : rareconnect TMAU forum 

How democratic systems tend to work.

1. They tend to want you to write your local rep about an issue.

2. That said, another option is to contact reps you think will be sympathetic (e.g. UK Carol Monaghan MP and Nicky Morgan MP ... as they are sympathetic to Chronic Fatigue Syndrome) ... but they are not 'duty bound' to reply, so probably won't. An idea may be to look for reps who are sympathetic about CFS.

3. Write to the Health Minster

Example Template of a letter (can be used, altered etc).


I wish to draw your attention to the disorder Trimethylaminuria and the concept of 'benign' Metabolic Malodor conditions.

I suspect many suffer from this and currently the Health System works against us or does nothing or pays lip service (perhaps for funding).

Much could be done now for our community, including perhaps even cures.

On the subject of BO/Halitosis, why not have a specialist BO/halitosis center, as any type causes misery for sufferers and, for those working ... for fellow workers ?

There are a number of ways you could help :
Examples :
Write to Health Minister on my behalf.
Ask a question orally to the PM or Health Minister in the chamber.
Ask for a debate.
Start an All Party Parliamentary Group.
Or whatever other way you think possible. 

Here are 2 recent petitions on the subject :
UK :
International :

Perhaps you can meet me to discuss it further, and/or reps from our community

Any form of pressure on politicians is an important way forward.

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