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to join : contact
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MEBO TMAU urine test

MEBO Research
TMAU Urine Test
United States only

SEE UPDATES HERE

1
test
$150 plus
shipping costs
2
tests
$250 plus
shipping costs

TWO PAYMENT PLAN OPTION
Send email to maria.delatorre@meboresearch.org to arrange, AFTER filling out Requisition Form, please.

Test analysis performed in batches of 20 or more

DATE: 19 JAN 2017
Currently on : BATCH #18
Batch #17/21 samples currently being analyzed
Samples analyzed since June 2012 :

314
Metabolomic Profiling Study
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
Herbal Hill
Deodorising Products
see this post
Herbal Hill site
Facebook Page

MEBO meetup map


Full details : https://goo.gl/TMw8xu
want listed ? contact map@meboresearch.org

Sonya's TMAU diet book

One of our group, Sonya McClinton, has written a 'low choline' recipe book. If you buy from Amazon through these links MEBO get a small % at no extra cost to the buyer


Amazon USA
38 sold

Amazon UK
14 sold
Don't have a kindle ? There are details on the right-side of the amazon pages how to download an app for smartphones, PC, or tablet. For Spain/Canada use the Amazon links in the left sidebar
BannerFans.com
RESEARCH DETAILS

DONATIONS THRU 31-NOV-2016:
£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

MEBO UK PAYPAL FOR TRINZYME

********
MEBO US PAYPAL FOR TRINZYME

Your currency will be automatically converted to USD or GBP by PayPal.

Option: pay with your credit card instead of PayPal account by clicking on either Donate button above.

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Blog Archive

MEBO 2017 Conference : Miami 31 Mar Read More

TMAU Webinar : Preti - Guo : Mar 27 Read More

Monday, February 27, 2017

Swedish TV show Outsiders looking for volunteer

Malodor-concerned Volunteer wanted for Swedish TV program (Outsiders, made by Titan TV).
TMAU or think they have TMAU ? (or metabolic BO/halitosis ?).
for series 14 of 'Outsiders' on Kanal 5.

contact :
matilda.borjesson@titan.se

They would like a Swede but would accept anyone ...
Swede,
Scandinavian,
European,
British,
American ?
etc

Outsiders is a popular Swedish TV show with a mix of 3 'people' stories in 60 minute shows.
They will follow you for a documentary of your life (probably edited to about 15 mins ?).
Outsiders on Kanal 5 is made by Titan TV.

Hoping to film in MARCH.
Any lost income would be reimbursed (please check).
Hoping to air in April/May.

If interested, contact :
Matilda Börjesson
Titan Television
matilda.borjesson@titan.se

This will be a piece in the series where we mix up different rare conditions to teach people about them and follow the people in their everyday lives. Usually we follow three different people/cases per show. Each show is 60 minutes long.

Cassie on UK 'Medical Mysteries' 2016

It will likely be similar to the UK TV program 'Medical Mysteries', which in 2016 Cassie kindly volunteered for.




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A EURORDIS and NORD Member Organization

Sunday, February 26, 2017

TMAU Webinar Mon Mar 27 : Preti & Guo


Preti RareC webinar 2013
TMAU Webinar. 
Monday March 27.
1pm EST (New York Time).
Guest Speakers : George Preti and Yiran Guo.
To speak on their recent TMAU paper.
Webinar platform courtesy of RareConnect.
Will be uploaded to YouTube afterwards.

Note : Webinar date/time subject to change, but this is the current agreed time/date.
We will keep you updated.

We are pleased to announce another rareconnect TMAU webinar. The speakers were leaders of the team that published the recent TMAU paper ...

Genetic analysis of impaired trimethylamine metabolism using whole exome sequencing.
Link to full paper
The paper was crowdfunded by the TMAU community via NORD

Guest Speakers :
George Preti (Monell Chemical Senses Center. Philadelphia)
Yiran Guo (Geneticist, Children's Hospital of Philadelphia)

Subject : the new TMAU paper :
The recent TMAU paper was interesting as it implied that genetic TMAU may not be solely due to faults in the FMO3 enzyme, but may also sometimes involve other enzymes.

RareConnect
RareConenct is a European charity that provides forums and networking for rare disorders. They have long been a help to the TMAU community, and hosted a few TMAU webinars before. This webinar will kindly be hosted by rareconnect staff member Marta.
rareconnect TMAU forum  

Abstract of paper :

Abstract
BACKGROUND:
Trimethylaminuria (TMAU) is a genetic disorder whereby people cannot convert trimethylamine (TMA) to its oxidized form (TMAO), a process that requires the liver enzyme FMO3. Loss-of-function variants in the FMO3 gene are a known cause of TMAU. In addition to the inability to metabolize TMA precursors like choline, patients often emit a characteristic odor because while TMAO is odorless, TMA has a fishy smell. The Monell Chemical Senses Center is a research institute with a program to evaluate people with odor complaints for TMAU.
METHODS:
Here we evaluated ten subjects by (1) odor evaluation by a trained sensory panel, (2) analysis of their urine concentration of TMA relative to TMAO before and after choline ingestion, and (3) whole exome sequencing as well as subsequent variant analysis of all ten samples to investigate the genetics of TMAU.
RESULTS:
While all subjects reported they often emitted a fish-like odor, none had this malodor during sensory evaluation. However, all were impaired in their ability to produce >90% TMAO/TMA in their urine and thus met the criteria for TMAU. To probe for genetic causes, the exome of each subject was sequenced, and variants were filtered by genes with a known (FMO3) or expected effect on TMA metabolism function (other oxidoreductases). We filtered the remaining variants by allele frequency and predicated functional effects. We identified one subject that had a rare loss-of-function FMO3 variant and six with more common decreased-function variants. In other oxidoreductases genes, five subjects had four novel rare single-nucleotide polymorphisms as well as one rare insertion/deletion. Novel in this context means no investigators have previously linked these variants to TMAU although they are in dbSNP.
CONCLUSIONS:
Thus, variants in genes other than FMO3 may cause TMAU and the genetic variants identified here serve as a starting point for future studies of impaired TMA metabolism.


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Friday, February 24, 2017

Adult TMAU Referrals : Evelina Hospital London

Adult TMAU referrals.
London.
Adult Metabolism Unit.
Evelina Children's Hospital, inside St Thomas Hospital.
Accept GP and local consultant referrals.
Similar service to Charles Dent London service.
Perhaps South London referrals only (tbc).
Added to MEBO Map (see sidebar).
Email : gst-tr.ELCHAdultMetabolicReferrals@nhs.net
Website : Evelina Adult TMAU refer

Mebo has become aware that another ADULT METABOLISM UNIT in LONDON has said it accepts ADULT referrals for TMAU. This would be similar to the Charles Dent Unit run by Dr Lachmann in North London.

How to get referred : 
You would need a GP or Local Consultant referral. There is a chance it may be for South London only (to be confirmed).
Full details can be seen on their website.
The current email on their website does not work (Feb 2017).

Contact details :
Adult Metabolism Unit
referral details :
Sky - level 6
Evelina London Children's Hospital
St Thomas' Hospital
Westminster Bridge Road
London SE1 7EH

email (this one is correct) :
gst-tr.ELCHAdultMetabolicReferrals@nhs.net

phone :
020 7188 4004

website
Adult TMAU referrals : Evelina Hospital London


Why go to an Adult Metabolism Unit ?
They have likely heard of TMAU and know the basics of TMAU.
Will likely order urine test easily. Then DNA test if positive for urine test.
Some sympathy.
They may have TMAU group sessions (a new trend).
Diet advice from the Diet Team.
Official diagnosis etc.

Adult Metabolism Units :
These seem to be a new trend in the UK, perhaps due to the single structure of the UK Health Service (NHS, top-down orders). At the moment it is likely the TMAU person will know everything told already, but the service for TMAU is in it's early years.
In other countries, perhaps you can look around to see if there are Adult Metabolism Units in your region.  

NHS Law/Contract circa 2014
Perhaps this NHS contract/law paper from circa 2013 has helped with the new clarity of Adult Inherited Disorder units purpose in the UK. Trimethylaminuria is included in the list.
E06/S/a : 2013/14 NHS STANDARD CONTRACT FOR METABOLIC DISORDERS (ADULT)
NHS : E06 : Metabolic disorders : Scope

MEBO Map
The MEBO Map (in the sidebar) is intended as a map of TMAU 'places', mainly places of help. Most of the locations are UK. The Heidelberg TMAU test is thought to be quite accurate. Also Denver TMAU test.
Better/new information for the map is always welcome.

Correction to this post are welcome.
If anyone has been to Evelina for TMAU, you can comment about it if you want.

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A EURORDIS and NORD Member Organization