MEBO Research Worldwide Database of TMAU Test Results

Latest copy of the voluntary public TMAU test result Database
updated : 27 Jan 2011

MEBO Research aims to widen knowledge of trimethylaminuria worldwide, both to the public and to health care professionals and researchers.

As part of this process, MEBO Research is launching a voluntary Worldwide Database of TMAU Test Results.

We aim to collect TMAU test result data in a largely unidentifiable manner. One copy of the database will be private and only shown discretely to parties who may be able to help us. The other will be a publicly viewable database on the MEBO Research website and blog, so that people can look at the results and compare. There is no directly identifiable information requested, such as your real name.

This way, everyone can learn about the different testing sites, their protocols and reference ranges, as well as to get an overview of the TMAU results. This database should also raise awareness.

Volunteers can skip any of the questions except the first one in each section, the phenotype and genotype test information.

Anyone wishing to add their results may do so through the form given below, or click on the link,

MEBO Research Worldwide Database of TMAU Test Results Form

Note : This is a separate project from the testing project we are working on with Eliapharma Services Inc.

Number of entries so far : 2

Person	Test Lab	provocation and sample type	TMA	TMA -oxide	Creatinine	FMO3 Capacity %	Possible Implication (expert opinion needed)	comment
1	Sheffield UK via Mullhaven	24 hour high-choline diet then early morning sample	153.3	1242.4	10.8	89%	TMAU2	TMAO very high, as is TMA
2	Sheffield	high-choline diet & menstruation	18.8	54.3	5.1	74.2%	TMAU1	menstruating
2	Sheff	high choline diet	18.9	89.9	7.4	82.6%	Border TMAU1

View the most recent copy of the full table here :

meboresearch.org/publicvoluntaryTMAUdatabase.pdf

Mullhaven test lab in England closes

Unfortunately, Mullhaven laboratory in England has closed due to the economic climate and other exacerbating business reasons (especially a new tranche of bureacracy, the Care Quality Commission) . It was the easiest 'least expensive' way to test for the urine TMAU test in the UK. All tests in the UK are done at Sheffield Children's Hospital but normally one has to access the test via a 'professional healthcare worker' such as a Dr, which in effect can be a hindrance.

The only other 'direct' route in the UK we know of that we would suggest trying is via Emed. This should actually be cheaper than Mullhaven cost, at around £175 (estimate). In theory, the person testing will also get 'advice' by email by an Emed Dr, although in practice TMAU will likely be a new concept to them. We have not heard of anyone doing the TMAU urine test via Emed, so we cannot confirm all will go as expected. We have been told by them that the process should go as we expect. We wrote a post about this a while ago : TMAU testing via Emed .

If anyone does the TMAU urine test via Emed we would be most grateful to hear how it went. 

In the UK, it should be remembered that TMAU testing is free via the NHS. 

New paper on Trimethylaminuria : Danish clinical case study

Medical papers on Trimethylaminuria are very rare, often taking the form of a reported clinical case. This is the type pbulished today on pubmed. The abstract implies it is about a case in Denmark, which is probably being published to raise awareness rather than any other reason. Any paper about TMAU published in pubmed does help to raise awareness.

Abstract
We present a case with a ten-year-old girl with trimethylaminuria (TMAU). Primary TMAU is caused by a deficiency of flavin monooxygenase 3 (FMO3) due to mutations in the FMO3-gene. Patients suffering from TMAU show an impaired enzymatic oxidation of fish-smelling trimethylamine, and their excretion of this amine in body fluids produces an unpleasant body odour. TMAU is also seen secondary to e.g. liver diseases. It remains unknown if TMAU causes other problems than malodour, and today social and psychological problems are considered the most important consequence. Treatment includes a low-choline diet and antibiotics.
medical paper : Fish odour - could be a sign of trimethylaminuria

We have sent an email to ask where the testing took place, and if others can test there.

Thanksgiving body odor & halitosis chat (Thursday 7pm EST onwards)

This Thursday is Thanksgiving Day in the USA and some may be looking to talk to others on a holiday. All are welcome (including those outside USA) to,

A special Thanksgiving Day Chat at 7:00pm/EST

Arranged by a regular caller on the usual very successful conference call line that has now been going for nearly 3 years.

USA : (712) 432 1620
access code : 391629#
NON USA : add 001 prefix

The conference call line is there for everyone at anytime, or you can call it up to get used to it before the conference call.

Washington DC 2011: You can book MEBO’s 2nd Annual Meetup

If you need assistance in transportation to the meet-up from your home, such as looking for anyone interested in carpooling, or in getting good bus, train, or air fares, please send me an email. If anyone would like to volunteer to get bus and train transportation information to Washington DC to share with us, please let me know at maria.delatorre@meboresearch.org.

MEBO Research 2nd Annual Meetup
Embassy Suites
Dulles Airport Hotel
8th, 9th, 10 April 2011

I'm happy to announce that MEBO Research has signed the contract agreement with the Dulles Airport Embassy Suites for us to hold our second annual Meetup on Saturday and Sunday, April 9th and 10th. The hotel has guaranteed us 20 suites at a rate of $89/night for Friday and Saturday nights, April 8th and 9th, and 10 suites for Sunday, April 10th (to check out on Monday). Bookings can be done online or over the phone using the MEBO Research Group/Convention Code: MER. This same rate will be extended one day prior, on Thursday, April 7th, subject to availability at booking time, for anyone wishing to stay longer. If you wish to stay even longer than April 7th - 10th, please send me an email at, maria.delatorre@meboresearch.org, and I'll try to arrange it for you (no promises).

Room rates include :

• Complimentary daily full breakfast per person
• Complimentary daily 2-hour Manager's Reception, serving alcoholic and non-alcoholic beverages and snacks
• Complimentary Dulles Airport shuttle
• Free self-parking.

MEBO's Director of Public Relations, Glenna Gonzalez, was kind enough to find this hotel, and she personally went to see it for us. She was very pleased with the elegant yet cozy environment that would serve as a welcoming backdrop for our meetup. She fell particularly in love with the Board Room, in which we will be meeting on Saturday to discuss very interesting topics.(More information to follow)

Rates per Suite:
King bed Non Smoking Suite $89/night
Two Double Bed Non Smoking Suite $89/night
Board Room for Saturday,
April 11th, RATE: $300 + 22% Service Fee + 5% tax = $381.00

Room rates are quoted net non-commissionable
and exclusive of (9%) local taxes..

Quoted rates will be offered, based on availability, to meetup attendees 1 days before the above dates.

Special Accounts: MEBO Research

Booking Group/Convention Code: MER

I have verified with the Sales Manager that no funds will be held on your credit card when using it to guarantee your booking. Embassy Suites will only use your credit card to confirmed your reservation. You do not have to pay, your credit card will not be charged, until you check-out after your stay, and there is no cancellation fee up to 6:00pm on the first day of your stay.

Booking options:

1. ONLINE RESERVATIONS: for the $89/night rates

Availability dates: anytime between 08APR2011 thru 10APR2011
Smoking or Non-Smoking
King or Two Beds (double beds), or No Preference

Special Accounts: Group/Convention Code: MBR

2. PHONE RESERVATIONS: In you wish to reserve for the $89/night rate one days before subject to availability, you need to call Reservations at, 1-703 464-0200 or 1-800-HILTONS (1-800-445-8667) and give them the MEBO Research Group/Convention Code: MER If you would like to stay longer for the same rate, please let me know and I'll see if I can get it for you (no promises).

I do hope you can join us! It will be a very worthwhile and meaningful experience for us all! See you there.

María de la Torre
President and Executive Director

maria.delatorre@meboresearch.org

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Related Post :

Spring 2011 Meetup in Washington DC

Our Own Website to book Washington DC Embassy Suite Reservations

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MEBO and Eliapharma TMAU Testing Update 3

DEVELOPMENT OF THE MEBO TEST PROGRAM

For the past three years, since MEBO Research was just a distant dream beyond the horizon, the main driving force that propelled us to pursue this dream was the thought that somewhere in this world, there are sufferers who don’t have any recourse to have access to a test that would help them understand about their body odor condition or a treatment possibilities to cure it, or at least to control it.

We have been advised that the test kits cannot be mailed out to the 28 people currently on the waitlist to test until this permit has been issued, and the authorities tell us that it should be by December 2nd.

Thanks to the volunteer work of various persons in our English and Spanish speaking community, organizational efforts have brought us very close to being a Charity now, and MEBO is almost at the first stages of body odor testing in places that have never had the hopes of seeing testing come to fruition.

In the long run, the MEBO Test Program aims to develop a more complete repertoire of varied body odor related diagnostic tests as well as research projects, under the guidance, direction, and supervision of Eliapharma and MEBO’s Scientific Advisors, in an effort to better understand the multiple causes of body odor conditions and their respective appropriate treatment. We are very fortunate to have the support and counsel of these, our experts, who have always been available and happy to help.

ABOUT ELIAPHARMA SERVICES INC

Eliapharma Services Inc. is a Contract Research Organization (CRO) located in Laval, Quebec, Canada.

Eliapharma Services Inc. has been in business for four successful years providing Analytical, Bio-analytical, Preclinical and Clinical Services for Biotechs, University Research Centers, Institutes, Pharmaceutical Companies, Generic Companies and Hospitals.

When will testing begin?

In order to be involved in the import and export of human specimens (urine or blood), Eliapharma has applied for an Import/Export Permit from the Canadian Authorities. We have been advised that the test kits cannot be mailed out to the 28 people currently on the waitlist to test until this permit has been issued, and the authorities tell us that it should be by December 2nd.

The Human Pathogens and Toxins Act (HPTA) establishes legal prohibitions and authorities to govern human pathogens and toxins in Canada. It is designed to protect the health and safety of the public against the risks posed by human pathogens and toxins, while allowing science and research to progress.>

This laboratory has been classified as a Containment Level 2 laboratory by The Office of Laboratory Security, which outlines Operational Practices under the Public Health Agency of Canada. This Classification is valid for one year, and is described as follows:

Containment Level 2 (CL2) See Organism Lists
This level applies to the laboratory handling agents requiring containment level 2. The primary exposure hazards associated with organisms requiring CL2 are through the ingestion, inoculation, and mucous membrane route. Agents requiring CL2 facilities are not generally transmitted by the airborne route, but care must be taken to avoid the generation of aerosols (aerosols can settle on benchtops and become an ingestion hazard by contamination of the hands) or splashes. Primary containment devices such as biological safety cabinets and centrifuges with sealed rotors or safety cups are to be used, as well as personal protective equipment (gloves, laboratory coats, protective eyewear). Environmental contamination must also be minimized by the use of hand washing sinks and decontamination facilities (autoclaves).

María de la Torre President and Executive Director

maria.delatorre@meboresearch.org

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Related Posts:

MEBO and Eliapharma TMAU Testing and future research goals

MEBO and Eliapharma TMAU Testing Update 4

INTERNATIONAL TMAU TESTING UPDATE 2

INTERNATIONAL TMAU TESTING UPDATE

More about TMAU testing through MEBO Research

TMAU Test with Eliapharma through MEBO Research

International TMAU testing in Canada : Special Group Rates

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Ways to raise awareness of Body Odor Conditions in the medical community

The best way to raise awareness in the medical community is to introduce professional literature written on this topic funded by the National Institutes of Health (NIH), as well as posts and articles written by sufferers with their permission, regarding what it is like to live with this condition.

Below are a few links that the medical community may find interesting. If you are interested in being a part of our Raising Awareness Campaign, you can select any of these sites and print the article to show anyone of your choosing. In addition to showing them to your doctor, you can also leave a copy or two at his or her office's or hospital waiting rooms.

Most of these articles are written or funded by the National Institutes of Health, so it's legal to copy and distribute. MEBO Research's websites and blog are written by sufferers, which also reference professional papers, and we hereby authorize anyone to print any portions of the MEBO Research publications to distribute. However, due to copyright laws, no paper written and published by a professional can be copied or printed without the permission of the author, but it is acceptable to print short quoted excerpts and to reference them. MEBO's website pages do just that; therefore, it is OK to print them.

Copyright Status
Information that is created by or for the US government on this site is within the public domain. Public domain information on the National Library of Medicine (NLM) Web pages may be freely distributed and copied. However, it is requested that in any subsequent use of this work, NLM be given appropriate acknowledgment.
National Center for Biotechnical Information (NCBI)

• http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=trimethylaminuria Includes Differential Diagnosis and Management
• National Institutes of Health, Office of Rare Diseases Research
• MEBO Research website : Trimethylaminuria
• MEBO Research website : About Metabolic Body Odor

Click on icons to print

You may also print any of two different flyers to post them on bulletin boards at schools, universities, churches, and hospital bulletin boards, etc. Arun has authorized that we do so using the Body Odor Support Forum name. One of the flyers has MEBO Research's name on it, and the other has the forum Body Odor Support's name on it. You may print both and place them in strategic places.

Thanks for your participation in this movement.

MEBO Research
maria.delatorre@meboresearch.org

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Related Post :

• Raising Awareness Campaign Flyers
• 'Unaffiliated' systemic body odors Part One: A patient advocacy group's viewpoint by MEBO Research staffYou can quote excerpts from this with a link, as some hypothesis are not yet researched, and this post is in pursuit of the much needed research.
• 1975 Science paper "7% could not smell trimethylamine
  
• Human olfactory psychophysics
  

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All welcome to the London Christmas meetup : 11th December

Annual London Body Odor and Halitosis Christmas meetup

Arranged by Arun Nagrath
Meeting at All bar One (outside seats) in Leicester Square, London
Saturday 11th December, 1pm onwards
All are welcome

Christmas is nearing, and that means the annual London body odor and halitosis Christmas meetup is around the corner; arranged as always by Arun Nagrath, who has arranged the meetups in the UK for a number of years, with great success and increasing numbers.

Like last year, the meetup will begin in the outside seats at All Bar One located in Leicester Square, London. Usually most people who attend cannot smell each other. Anyone wishing to attend can contact Arun at the email address below or on his mobile, or turn up on the day. You will be heartily welcomed and be at ease with others who are going through the same emotions.

Arun's post on the bodyodorsupport.com forum announcing the meeting can be read below and the link to the thread is given. Come along and relax and enjoy.

Message from Aran Nagrath

Our next meetup for both breath and body odour sufferers is coming up soon!

We are having a meetup for breath and body odour sufferers 1pm onwards on saturday 11th december 2010. Initially, we will meet outside All Bar One, Leicester Square, London, England.

If anyone is interested in meeting other members (sharing tips and experiences) call me on my mobile 07753 492 759 or email me on arunnagrath@hotmail.com

90% of the time, people with halitosis or b.o can't smell other members at the meetups. This is a good reason to come!

Arun

bodyodorsupport.com

Arun's report of previous London Christmas meetup 2008

London Xmas meetup : Are you going ?

Chat with PTC representative about ataluren

We have had our chat with a PTC representative about ataluren and how the TMAU community could be best prepared to promote research into its use for TMAU cases with nonsense mutations. Nothing concrete came out of the dialogue, although hopefully we have made our case known to PTC at least, and the discussion itself was convivial. The representative was from the Customer Relations Department of the Company.

Here is a summary of the points discussed :

The representative pointed out that ataluren would only be potentially beneficial to those with genetic disorders caused by nonsense mutations. Nonsense mutations usually make up a small percentage of the cause for most genetic disorders.

While PTC is conducting some research studies in-house, it's unlikely TMAU would be added to their in-house list of trials in the forseeable future. It was suggested that our best prospect of getting an ataluren trial for TMAU would be to find a researcher externally, and possibly to lobby the NIH or FDA or other sources of funding.

Ataluren has been trialled in a large study for muscular dystrophy. The original results (mainly based on a '6 minute walk' to look for improvement) were not significant, but other data since seem to have shown improvement. It has been and is now being trialled in a number of disorders. Curiously it seemed to work better at smaller dosages, though this is not an uncommon trend.

More informartion on Ataluren

The PTC Representative was informed of TMAU and is aware of the MEBO Research website. They pointed out that patient advocacy groups can have important pivotal roles in research, and their muscular dystrophy website was popinted out as a good example of a patient advocacy group acting as a hub and collating data. This is generally how MEBO Research sees it's future role as well. The rep was informed of the TMAU Foundation in New York, and was grateful for this information.

PTC is hoping that if all goes well ataluren will be approved by 2011, though of course this is subject to circumstances.

Overall it was a nice informal chat, and TMAU is now on their radar at least.

mobile phone application possible for TMAU testing ?

diabetes glucose meter

As well as looking for treatements/cures for systemic body odors, one of the interests of MEBO Research is to seek ways that people can monitor their condition frequently in a simple manner. An obvious answer for this in relation to TMAU would be a handheld electronic device that has a sensor to read trimethylamine measurements. These are already commonly used for diabetes self-management, such as the accu-chek series of devices by Hoffman-Roche.

An interesting variation of such a device for testing for sexually transmitted infections is being developed, which will be an application for mobile phones, and the testing strips will cost around $1. Like the diabetes testers, this will likely rely on testing for levels of certain biomarkers. The eSTI is being developed in the UK.

Here are a couple of recent media articles on the eSTI :    
Daily Mail article on eSTI
Guardian article on eSTI

It is likely that a device for monitoring trimethylamine levels could be easily developed and manufactured already. The difficulty is probably convincing a company that there would be a market for such a device. It is interesting to note that the diabetes electronic monitors often retail for less than $50.

Phone call with PTC Therapeutics this week

Regular readers will know that PTC Therapeutics are trialling a new drug they have developed, ataluren, that is designed to overrule the premature stop that happens in the development of a protein in genetic disorders due to nonsense mutations.

We have emailed them a few times to make them aware of TMAU.

This week we will be having a chat on the phone with one of their departments. They will be advising us how to best make an ataluren trial for genetic TMAU nonsense mutation cases attractive to pharmaceutical companies and biotechs who normally do these type of trials. We will let you know how the phone call went in the next few days.

Nonsense mutations usually make up a minority of cases in genetic disorders.

TMAU DNA testing now available from preventiongenetics.com

click to read

One of the goals of MeBO Research is to make trimethylaminuria testing more accessible worldwide and hopefully cheaper. Someday we would like to see TMAU testing being available from most local labs (hospitals or otherwise).

Recently, we wrote a number of private DNA test labs asking if they would consider making genetic TMAU DNA testing available, which means DNA testing for known sub-normal FMO3 copies.

We have just been informed that preventiongenetics.com will now offer the FMO3 DNA test (full sequencing) plus an interpretation report for $670 (please confirm when you book). A Doctor's request is necessary.

We are very grateful to preventiongenetics.com for adding the TMAU DNA test. Currently this means that HBRI is still the cheapest in the USA for the TMAU DNA test at $400 (and Dr Cashman who runs HBRI is a renowned TMAU/FMO3 expert) and HBRI also allow the public to test direct without doctor's orders.

Nevertheless we are grateful that preventiongenetics.com has had the foresight to offer the DNA test, when most other labs do not.

MeBO Research will seek to make a TMAU DNA test available in the future whenever possible. We will offer the full sequencing form of testing, with low price and quality being the primary factors.

preventiongenetics TMAU DNA test requisition form
TMAU listed in list on preventiongenetics.com site

Raising Awareness Campaign Flyers

Click on icons to print

As part of our Raising Awareness Campaign, our MEBO Research Technical Consultant has designed flyers that anyone can copy and print to then take them to doctors' offices or hospital waiting rooms, libraries, schools, College and University, notice boards, where one may find plenty of others about various illnesses, such as heart problems, diabetes, etc.
MEBO Research
maria.delatorre@meboresearch.org

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Related Post :

• Ways to raise awareness of Body Odor Conditions in the medical community
• 'Unaffiliated' systemic body odors Part One: A patient advocacy group's viewpoint by MEBO Research staff

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