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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

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UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

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, October 20, 2019

TMAU Meeting with Prof Liz Shephard

MEBO's Karen was at the TMAU meeting with Prof Liz Shephard in London on 19Oct 2019.

Update : See this post for the official final summary   

Here is Karen's summary of the meeting
Meeting/Discussion Group with
Dr, Azara Janmohamed
and Professors Elizabeth A. Shephard,
and Ian R. Phillips
on 19.10.19. at St Mary’s Hospital.

We discussed:

Update :
The post has been removed for now while clarification is made as to Prof Shephard's willingness for what is made public about the meeting.

The post should be updated around Wednesday.

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Anonymous said...

After all these years I dont understand why their isn’t better treatment options laid out on the table. This condition is destroying people’s llives, people I hear and talk to daily are contemplating suicide as the only way out. There has to be better treatments that’s not being discussed at this time. People are suffering in silence and no one seems to care because it’s not life threatening, but so many people wants to end thei lives because of it...We definitely need help, and we need it fast.

Oct 21, 2019, 11:46:00 AM
Anonymous said...

I have been taking resveratrol from Mega Resveratrol after trying everything else. Recently Dermetel, a student organization in the United States, offered pure DMB for sale on Amazon. I thought, if DMB is available to them, why not see if Mega Resveratrol could add extra DMB to some of its product, and offer it for sale to TMAU sufferers? (They have already offered resveratrol enhancers, so they might be interested in this.)

Other potentially interested companies might be Yerba Buena, producers of Odor Cleanse, and Dermetel, who might want to try again. I think they found that pure DMB is too volatile to be sent by mail, but perhaps if it is mixed with pure resveratrol, it would be acceptable to the post office.

This would be an avenue to pursue, wouldn't it?

Oct 25, 2019, 2:53:00 AM
Anonymous said...

Still no update yet ?

Oct 29, 2019, 4:52:00 PM
blogcontributor2 said...

A new update post will be done.
It will be an approved version of the update.
Also, new news ... they have applied for a grant from the trust, but it probably won't be until February until the request is reviewed.

Oct 29, 2019, 8:01:00 PM
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