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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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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)

Sunday, February 12, 2012

Message from Karen James about Rare Disease Day

Karen James; leading Raising Awareness systemic odor campaigner and MEBO Research Public Relations Director in the UK, is once again tying in an awareness campaign with the World Rare Diseases Day on 29th Feb2012.

Below is her message about the campaign. Karen appeared on popular UK mid-morning TV show 'This Morning' last year to raise awareness

Email newsletter from Karen James

Wednesday 29th February is International Rare Diseases Day. It would be good to make our voices heard on this day

I am going to contact all of the organisations from last year’s raising awareness campaigns (who have already been informed about TMAU and its effects) and remind them of our presence. Please join in this effort by doing the same! Below is the gist of the e-mail I will send to them and a list of the UK contacts we targeted last year. It is a good opportunity to e-mail anyone you know with the MEBO Research petition and also to contact organisations in your own country if you are not in the UK. Please add any contacts from outside the UK to the list below and UK sufferers will be sure to support you by e-mailing them as well. You can e-mail most of the contacts using blind carbon copy to save time but I will also send some letters via post as most professional organisations are obliged to reply in writing to any letters received.

The gist of my e-mail:
Karen raises awareness of systemic odor disorders
TMAU and other foul-odour-producing metabolic/systemic disorders (which, unfortunately, are still un-named) are very highly under-diagnosed conditions. TMAU (and other odour disorders) are considered rare disorders. However, the fact that they are so rarely diagnosed is a key issue. We have contacted you before requesting help with a simple task – raising awareness of TMAU and odour conditions primarily amongst the medical professions. We ask you now, on this day which recognises rare diseases, to reconsider the plight of sufferers of this devastating, invisible disability. If our existence continues to be ignored, research is less likely to occur and a cure will not be found. It is our right to be heard on this day and to protest against the social rejection and dismissive attitudes we face.

Below is a raising awareness petition devised by MEBO Research which can be signed (anonymously) by any individuals who believe that sufferers of odour disorders have the same human rights as other human beings.

UK Contacts

Royal College General Practitioners

Royal college of Physicians

General Medical council


Medical Research Council


Health MPs

Dental Orgs.

USA infectious disease clinic

Apologies for those e-mails which do not work. Please add relevant contacts to the list. I have not included online contacts or addresses for written letters but let me know if you would like these also.
Any other ideas?

Kindest regards

PS. please forward this e-mail to anyone else who may want to take part

body odor petition
MEBO Research


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