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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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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

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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

Tuesday, May 15, 2018

Karen's UK Campaign : Write to MP's

Karen James from MEBO UK recently attended a Genetic Alliance 'how to campaign' workshop in London, to get tips on how to promote awareness and get things done about Rare Diseases.

2 main factors in awareness and change are :
Political help
Ad campaigns

Here Karen writes on Political help.
This is based on writing to UK MP's, but could apply to any country.

Following on from the 'How To Campaign' workshop organised by the Genetic Alliance, I propose that everyone sends a, very short, written letter to their local MP asking them to pose a question in parliament. All of us in the UK have a local MP who can represent us in parliament
List of UK MP's offices

Our former e-mails have already done a lot to raise general awareness. I know this because some people have sent me the replies they received from MPs. True, the replies are the usual fobbing off, but the information we wanted to share has been very clearly conveyed, so well done to everyone who took part in that initiative. I think if great numbers of us follow up with a written letter asking the MP to pose a question, that could have some effect.

I think testing is a major issue. Without a proper test recognising our conditions, we actually have very little power, especially in cases where we need to prove discrimination. Moreover, hundreds of 'invisible/non-diagnosed' people still have no support whatsoever. There is no point in getting referrals from a GP if the test provided by the NHS isn't useful. We must keep fighting for this situation to be improved first and foremost.

What you may be thinking right now:

I can't be bothered to do this; it is futile...
I say, a united effort with everyone working simultaneously could have an effect. Non-UK people have taken the time to write to our UK MPs, so why can't you?

There aren't enough of us to make an impact...
There are a great many of us with this disorder around the UK in different constituencies, and if every person contacts the local MP, that is great. One MP, Caroline Dinenage, showed some interest but I'm not in her constituency. If anybody is in Gosport, please try to contact her!

I'm sure somebody else will do it so I'm not needed...
I say, that is just laziness. We take the time to write long messages moaning about our lives, so why can't we put a similar effort into trying to do something  positive? Some people at MEBO are trying hard to move research opportunities forward. Here in the UK, we can support that by trying to establish a better national test programme.

I want to remain anonymous...
I say, get over it.

I haven't got the time...
I say, a short letter to be printed out and put in an envelope and sent with a stamp isn't a mammoth task.

Please copy/modify mine (below) if you wish:

I am writing regarding metabolic malodour disorders such as Trimethylaminuria, which is a socially disabling, alienating malodour condition.

Producing fecal, sewage, rotten egg or fish odours has a devastating impact on all aspects of the odour sufferer’s life. In spite of this, metabolic malodour disorders are regarded as trivial by some medical practitioners because they are diseases without a death end point. Thus, ostracised, bullied, vulnerable people are left without support and, therefore, at risk of suicide. The UK Strategy for Rare Diseases (Page 15) claims: The Government is committed to shortening and improving the quality of the diagnostic journey for rare disease patients.  However, our community has yet to see evidence of this.
I wonder if you could raise this question in Parliament please:

To ask the Secretary of State for Health, whether his Department will encourage the NHS to establish a comprehensive, accurate and relevant test for metabolic malodour disorders such as Trimethylaminuria so that sufferers can be diagnosed and their human rights protected.

Also, could you please let me know if I may attend one of your surgeries to discuss this further.

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