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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

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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

Thursday, October 27, 2016

New London TMAU Patient Support Group. Karen writes.

London Metabolic Unit TMAU Patient Support Group.
Started in July 2016 by the Adult Metabolic Unit Staff.
Expected to meet 3-4 times a year.

Karen attended the recently started TMAU patient support group started by UCLH adult metabolic unit. So far the group has met twice (July and October).
This is the 3rd known  Adult Metabolic Unit to start a TMAU patient support group. The other 2 known groups also started this year, at the metabolic units in Dublin (Ireland) and Birmingham (UK). MEBO Research UK Public Relations Director (volunteer).

Message from Karen about the recently started TMAU patient support group started by UCLH this July. So far has met twice.

Summary of TMAU Patient Group Meeting on 21.10.16 at University College London Hospital 3-5pm

The TMAU patient group at UCLH was set up in July 2016 by members of Dr Lachmann’s staff team. At the current time, it is open to those patients of Dr. Lachmann who have received a positive diagnosis of TMAU at his clinic. It is hoped, however, that the group will be able to expand to include other sufferers of malodour in the future.

The main activity of the session, led by a clinical psychologist, involved group members analysing the skills/attitudes they adopted in order to challenge a particular difficulty brought on by having TMAU. A few people described the initiatives they took in specific situations, for example, their actions during incidents of workplace bullying, or their preparations to improve confidence prior to attending a social event. Other group members identified, and then discussed, the empowering language used to describe these actions.

The group discussed the issue of NHS GPs refusing to refer patients for TMAU testing even when the patient has presented a page of information (printed from  ‘how to get tested’) during the consultation. It was decided that further raising awareness is needed, and it was agreed that an information leaflet should be designed for this purpose. The leaflet will be displayed in the Charles Dent Metabolic Unit of the National Hospital for Neurology and Neurosurgery and can also be distributed to GP practices.

Subsequent discussions were cut short by time, but they included: sharing strategies to deal with bullying at work/school/college and comparing the efficacy of various supplements such as chlorophyll, Body Mint, charcoal, riboflavin.

Finally, it was agreed that the patient group needs to be led and managed by its own members and that volunteers from our own community can take part in organising the content of sessions.

So we need a logo!
Our task is to create a very succinct, informative TMAU leaflet which features a simple logo. The graphic could be designed to identify the group as a strong, united community, which will support fellow sufferers. If you would like to contribute a logo/graphic for this leaflet, please let us know.

If you would like to contribute to the wording of the leaflet, make corrections/improvements, or make suggestions as to what should be included on it, please contact At present, we have these ideas for information:

TMAU (Trimethylaminuria) is a metabolic disorder in which the sufferer’s body emits the malodorous gas trimethylamine via the skin, hair, and/or breath.
Although the disorder is not yet curable, patients take many measures (dietary restrictions etc.) to try to diminish the pungent odours they produce.
Diagnosis of the disorder in the UK is available via the NHS through a GP referral to a metabolic specialist such as Dr. R. Lachmann. See : for further details.

If you would like to help find a solution for this disorder, please go to international charity MEBO Research :
MEBO Research website
MEBO blog (this site)

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Kaneoheboy said...

What happened with the Resveratrol studies?

Feb 14, 2020, 4:33:00 PM
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