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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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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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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

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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