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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 :
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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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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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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :

current participants : 113 (update 18dec20)

Friday, November 11, 2016

UK NHS TMAU Test Campaign : Health Committee

Sheffield TMAU urine test 
Discussion :
It seems the UK NHS (and probably all national health systems) do not have a 'rare disorder test strategy' outside of those disorders that are part of the National Screening Program. Possibly there is also not a 'test strategy' among the health system rare disorder test labs, meaning it's probably up to the staff/management which rare disorders they decide to test for, and often it will mean a rare disorder may have only one national lab testing (if at all), and no secured source of the test.

As we move ahead with TMAU testing (and indeed for all rare disorder tests), it would seem a good idea if governments have a 'rare disorder test strategy' which will be a law the national labs must respect.

One possible way to put pressure on UK labs to have a national strategy would be to contact the Parliament Health Commitee. Sometimes they look at cases, perhaps even just for a few hours.

An aim would be to order the UK NHS rare disorder labs to have a strategy to make TMAU urine testing available at all times (e.g. not relying on one source) and preferably being available at more than one lab (preferably many/all) to perhaps drive up standards, drive down cost etc.

An ideal option would be to be able to test direct, but it's unlikely the committee would approve this, as health systems are set up to 'protect the unwell person' or something. In reality this policy creates a monopoly/cartel/regressive system. The committee looked at this system for HIV testing an made direct testing an option (i.e. they looked at how the system affected testing for a serious disorder).

message from Karen, MEBO PR Director, about the UK Health Committee     

Another place to contact regarding a request for a specific policy regarding NHS TMAU testing:
Health Committee - examines policy issues related to the Department of Health and its associated bodies.

Health Committee
House of Commons
Telephone: 020 7219 6182


Whether the Sheffield lab test is restored or not, it should be a priority for our community to get a reliable, accurate testing facility established in the UK. The phenomenon of false negatives is not uncommon, and people may need to test more than once. A secure test is needed in any case.

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