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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

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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

Wednesday, September 26, 2018

TMAU and MTO Test in Holland

Holland has a lab that tests for TMAU (urine and DNA),
and also last year started a test for :

SELENBP1 gene (DNA test)
Urine test for 2 or 3 volatiles (not known yet). Seems to be METHANETHIOL and DIMETHYLSULFIDE and possibly others.

MEBO Mental Health Director Crissan has been in touch with the lab, and got these details about their metabolic malodor tests.

Crissan writes : 

The following information was provided by the head of the genome lab at
Radboud UMC:

The good news is that the lab does offer the Trimethylaminuria and
malodour test. Both tests are available for local and international
patients. The TMAU test (genetic and urine) can be ordered online. The
malodour syndromes test (urine and plasma) through a form.

In addition:

- The lab has verified that a referral from a physician is always
- Payment should be completed beforehand, the physician will receive an
invoice with instructions and the patient has to complete the payment
before the test can be processed. - It will vary per country and
insurance policies if the expenses are covered or not.
- Patients should get all of the information about the tests from their
referring physicians. This includes all questions with regards to test,
instructions, sending materials and the test results.

- Herewith the lab contact information. ( patients can provide their
physician with this information):

Postal address:
Genome Diagnostics, route 815
Head laboratory: Dr. H. Yntema
Postbus 9101
6500 HB Nijmegen
The Netherlands
Tel: +31(0)24 3613799
Fax: +31(0)24 3616658
email :

- It's advisable that the physician consult other physicians/ metabolic
specialist with knowledge of TMAU if they have questions with regards to
test, interpretations of the results etc. The laboratory will not be
able to provide any information with regards to these matters.

Herewith the test instructions mentioned in the Request form (see
attachment), these corresponds with the test instructions I have also

I Fish odour syndrome or trimethylaminuria diagnosis
Deficiency of the Flavin-containing Mono-Oxygenase 3 (=FMO₃) is
responsible for fish odour syndrome or trimethylaminuria (OMIM 602079).
First line
diagnostics is the mutation analysis of the FMO₃ gene (requires
uncentrifuged EDTA blood or isolated DNA). In case of variants of
unknown significance
in the FMO₃ gene we will advise second line testing using a fish meal
loading test (a fish meal with preferably 300 grams of fresh fish). In
the pre- and
post load urine samples we measure trimethylamine (TMA) and the ratio
TMA/TMAO using NMR spectroscopy.

NMR spectroscopy also will confirm or exclude dimethylglycine
dehydrogenase deficiency as a cause of a fish like malodour.
We prefer to obtain two samples:
1. Urine (>2ml) on normal diet (=pre-load sample)
2. Urine collected during 12 hours after a fish meal with preferably 300
grams of fresh fish. From this volume >2ml should be sent frozen on dry
ice (=post-load sample).

II Other malodour syndromes
For other non-fish like malodour syndromes we advise NMR spectroscopy of
urine and heparinised plasma (2 ml of each to be sent frozen on dry

For DNA analysis:
EDTA 5 ml – do not centrifuge
EDTA plasma for DNA analysis (or isolated DNA) can be sent at room
temperature to Radboudumc, Laboratory for Diagnostics, PO Box 9101,
Internal Post 815, 6500
HB, Nijmegen, The Netherlands and to the attention of the Translational
Metabolic Laboratory.

Urine and heparinized plasma for NMR analysis should be sent well-capped
and frozen on sufficient dry ice to Radboudumc, Laboratory for
Diagnostics, PO Box 9101,
Internal Post 815, 6500 HB, Nijmegen, The Netherlands and to the
attention of the Translational Metabolic Laboratory.
For NMR spectroscopy minimal volumes required are:
- Urine; 1 ml
- Heparinized plasma or serum; 1 ml
- Cerebrospinal fluid; 1 ml

Herewith all of the links:

Request form Trimethylaminuria and Malodour syndromes:

Link to order the test online (physician has to do this):

The malodour test can't be ordered online, so I suggest patients to ask
their physician to fill out the request form, if they specifically want
this test or a combination of TMAU and malodour test. (see attachment).

-  Fill out Request form Malodour syndrome and select option II other
malodour syndromes

Turnaround times are mentioned in the table.



- Trimethylaminuria test 400 Euro's, approximately 480 USD
- Malodour syndromes test 327 Euro's, approximately 381 USD

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