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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

Scroll down and select country

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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Blog Archive

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

Monday, October 27, 2008

We had two Conference Calls 5 hours/each this weekend!

This Sunday, we had 52 callers participating in our conference call, which started at 2:00p.m. Not everyone stayed from beginning to end, as callers joined in and left throughout the call, while some talked and others just listened.

We talked about many things such as the organization plans of having our next Meet-up at Miami Beach this coming Spring 2009, as well as the progress of our anthology. As usual, we also exchanged information on the odor management protocols that have helped some sufferers.

We discussed the pros and cons of the various options we have regarding which site to move our MSN forum as a result of the announcement that The MSN Groups service will close in February 2009. This will probably be an ongoing discussion for the next four months, and in the end, our Manager, Arun will make the final determination.

One of the callers told her story of her recent experience with having a colonic irrigation, as opposed to using the lactulose recommended by the National Institute of Health in the TMAU Management protocol. See the posts in this blog entitled, Colonic irrigation : A demonstration video and An odor-reducing management protocol discussed in the Thames Festival meet-up.

The benefits of doing a Colonic irrigation as opposed to taking a laxative is that with a colonics, one doesn’t experience the normal increased of odor lasting a couple of days produced with the first lactulose treatment to cleanse the gut. Since the lactulose cleansing is a slower process, it tends to increase the odor for a day or two; whereas the Colonic irrigation cleanses the colon very well in only about 45 minutes without producing this undesirable increase in odor. In addition, follow-up lactulose cleansings should not produce the significant increase in odor, since the gut had previously been cleansed, as long as a good diet regimen is maintained.

An impromptu conference call was also held the previous day, on Saturday at 3:30p.m., with only a 15 minute notice, and Ben, Cabel, Sharon, Arun, and Jess were able to attend. Ben was able to join for the first time, and he stayed on the call for three hours, even though he says he doesn’t usually like talking too much on the phone. The call was still going at 8:30p.m. As Arun posted later in MSN, “It's always a pleasure chatting to my family. I long ago discarded the notion that the term family has to have a biological link (brother, sister, mother, father). You guys are all my family. Well actually, I believe it will eventually come out that we DO in fact have a biological link (we share a defective metabolic pathway). But more than this, we understand each other's lives and feel compassion for each other. I am so proud to be a part of this group!”


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