Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out


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

Popular Posts (last 30 days)

Upcoming get-togethers

Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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

Sunday, December 14, 2008

Arun tells us about the London Meet-Up

Well, let me tell you guys a bit about the Meetup. I arrived at 'All Bar One' (pub/restaurant) just before 12pm and within a few minutes I was pleased to meet B, a member who had been absent from our meetups for some time as he lives a bit further away. We spent a little time catching up with what we had done since we last met.

Then a new Group member arrived from Paris (!) just for the day. He told us it took him just 2 hours to come by train through the Channel Tunnel. Me and B remarked how it took us nearly that long just to come the short distance from where we lived. The French guy came because I found a French message board on Halitosis and posted details about our meetup on it:-

The message I posted was probably largely incomprehensible as it has been years since I studied French and my vocabulary is largely confined to phrases like 'Je t'aime'

body odor meetup londonNext came a lady who had attended our meetup once previously (in September). She came with another new member I had introduced since they were coming via the same train station. Since the new member had already been chatting with this lady, she didn't feel so much the new member at the meetup.

Anyway, within a short while, there were already 8 of us drinking in the Bar. B told me he would like to 'eat Indian' and I asked him if he could rephrase that

We found a lovely South Indian restaurant called Woodlands in nearby Piccadilly:-

Well a lot of us had Dosa, a kind of South Indian Pancake stuffed with potato. The food was absolutely delicious. Another new member joined us in the restaurant and we joked how the curries might make our breath smell of onions (chance would be a fine thing! )

After the meal, we returned to Leicester Square and met up with our 10 th member. We sat in a café overlooking the Square and had cocktails. The square had fair-ground attractions and all the surrounding trees’ branches were covered in glistening green lights.

There was a magical feeling in the air, it had kind of like a Disney quality with sparkling specs of silver awash. Just then, a huge army (perhaps 100) of red-robed Santa Clauses arrived, some were female Santas with open robes sporting the most daring of bikinis. I took my glasses off as they seemed to be steaming up; Christmas had indeed come early!

The whole day was largely a social event but we had discussed how our Group seems to have a higher incidence of certain disorders such as Irritable Bowel Syndrome. Dyspepsia, Chronic Fatigue Syndrome and Multiple Chemical Sensitivities. For instance one of the new members told us how his odour seemed to start at exactly the same time as the onset of his Irritable Bowel Syndrome.

Another new member told us how her only symptom was a most pervasive foot odour which her husband couldn’t detect at home but her work colleagues always could. Interestingly, surgery (lumbar sypathectomy) had totally resolved the odour in one foot but it still remained in the other foot!

Another member told us how she had recently been tested positive for Secondary Trimethylaminuria and asked about the treatment options. I pointed her to the NIH protocol and I mentioned to her that we hope to refine this even further with experience from our future Patient Database. The members had diverse conditions and had tried a diversity treatments, mostly without success.

Unfortunately, I can not post up any pictures of our meetup for you guys as we have a no-photography policy at the UK meetups. One of the new members did ask if he could take a movie of us on his mobile phone but we explained this rule has been introduced to preserve confidentiality, especially for new members who are likely to feel more guarded in their first meetup. I would have allowed myself to be photographed for the group but I put on a few pounds in the winter time as I’m too lazy to go to the gym when it’s dark so early.

Out of the 10 members who attended, 4 were new members. 6 men and 4 women attended the meetup and our ages varied from early 20s to 60s. With 10 people present on 2 adjoining tables it was often difficult to hear what the distant members were saying and we invariably ended up chatting in 2 separate groups. However, everyone seemed to feel very comfortable at the meetup, even the new members.

Most of us decided to keep in email contact with each other through me. Many made new friends, especially those living close to them. I encourage every member to have at least one email buddy from the group. Many have have found this buddy contact helpful.

I would encourage all members to investigate ways of arranging group meetups near them. This is about a lot more than picking up useful tips, this is about a kind of emotional healing/ bonding.



Post a Comment