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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

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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

Friday, April 5, 2019

Karen's UK TMAU Disability Campaign

A message from  MEBO's Karen .....


I have contacted the UK office for disability issues. If anyone else would like to contact the office for disability to request that TMAU etc is explicitly mentioned in the UK guidance notes for disability, that would be great.,


The message I sent:

I have read with interest the guidance notes for people with disabilities. The 'Definition of Disability under the Equality Act 2010' is very detailed and mentions several examples of conditions/situations which could be described as disability. I would like to request that you include among the examples the case of Trimethylaminuria and metabolic malodour conditions. Conditions on the metabolic body/breath odour spectrum are becoming increasingly common, and sufferers are frequently discriminated against in the workplace because of their socially alienating symptoms. However, in some cases, reasonable workplace adjustments can be made to accommodate odour sufferers.

Trimethylaminuria (TMAU) is only one of a number of metabolic body and breath malodour conditions and represents the tip of an iceberg. It is highly under-diagnosed (poorly recognised/misunderstood by health professionals and also inadequately tested for). TMAU is not a totally new disease, but, like autism, it has become more prevalent in modern society. The body’s inability to neutralise malodorous gaseous compounds, such as trimethylamine, is absolutely not a hygiene issue. Moreover, malodorous chemicals are actually worsened by the use of perfumes. The smelly gases emitted from the body and bodily fluids, which include fecal, rotten egg, rotten fish and ammonia smells, are overwhelming and repellent, causing nausea and allergic-type reactions in many people. This impedes the sufferer's ability to interact with work colleagues, which, in turn, has a substantial, long-term adverse effect on the sufferer's life and affects all relationships negatively.

I hope that this information can be included in your document as it could assist metabolic body/breath odour sufferers who are at risk of being dismissed or ousted from their jobs. Enabling metabolic malodour sufferers to work with dignity and contribute to the economy would actually reduce government expenditure because sufferers would not be forced to be reliant on state benefits and NHS counselling services. I hope, therefore, you will consider amending the 2010 document.

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