Scent-detection dog : A TMAU & Body Odor sufferer's best friend!

TMAU SERVICE DOG PROGRAM BLOG
Click here

Dogs can separate one odor into all its components.
We smell beef stew, they smell potatoes, peas, carrots, etc.

Pawsibilities Unleashed, Pet Therapy of Kentucky, Inc., is kindly donating a puppy and training it as a TMAU Service DogIt has been said many times in the forums, conference calls, and meetups, that the most difficult aspect of undergoing any odor-management protocol is to not have feedback about one’s odor levels, as family members and the sufferer seem to have, or develop, an anosmia to the body odors. It is not clear why this should be. The 2 main theories are that they have become acclimatized to the odor, or there is some sort of 'anosmia immunity' from smelling the body odors. Perhaps the saddest irony about the problem is that the sufferer has no way of monitoring their condition as a result.

So, what options does a sufferer have to measure his/her odor levels? Apart from purchasing very expensive equipment that would have the capacity to measure only some odorous compounds, which is not practical anyhow, there is also another option - to obtain a Trimethylaminuria Medical Alert Service Dog (SD) trained specifically to give immediate feedback not only about whether a sufferer has odor, but to also indicate if the odor is at a high or low level. The main aim would be to help the person understand their 'smell pattern', Humans acclimate to scent in a room - dogs never doso that perhaps they could alter their diet to suit, to better understand what triggers it, and to plan social activities accordingly.



The service dog could offer many other social skills and psychological benefits, such as being a companion and boosting confidence, for example. An SD’s immediate feedback on a sufferer's odor levels can help him or her feel empowered and confident, allowing for a sense of greater freedom that encourages the sufferer to become more involved in social situations while having lower odor levels. SDs are trained to also sooth anxiety panic-attacks and depression.

MeBO has proactively been looking into testing the possibility of training a service dog for trimethylaminuria sufferers, and ultimately for sufferers of other types of body odor conditions. Initially, the focus will be working with a diagnosed TMAU sufferer, since the odor can be more easily reproduced in a controlled manner to train the dog.

Dogs have a huge amount of brainpower devoted to scent (size of large walnut, matched to a humans pea size area).After looking for dog trainers who specialize in dogs trained to help with health disorders such as diabetes and seizures based on scent, we were fortunate to get a positive and supportive response from Frankfort Master Trainer Liz Norris, who runs Pawsibilities Unleashed, Pet Therapy of Kentucky, Inc., This non-profit 501(c)3 organization has worked with training SDs for persons with a wide range of disabilities, including Diabetes (works on three different odor levels), Epilepsy, Anxiety/Depression, PTSD, Autism/ASD, Hearing/Signal, Medical Alert conditions (sleep apnea, migraine & Fibromyalgia, Blood pressure, Willims syndrome, Dravet Syndrome, Motility Assistance).

MeBO has been discussing at length the possibility of training a TMAU Service Dog with Pawsibilities' Founder, Liz Norris, AKC-CGC Instructor, and Therapy Evaluator.

Normally it would cost a minimum of $5,000 to train a dog, but Liz has most generously offered us her services and donated to our cause $5,000-worth of training expenses including her personal time and a puppy with the proper temperament to be trained specifically as a TMAU Service Dog. This training will encompass Service Dog Manners, Public Access Work, Obedience Training, Scent work, Crate/House training, AKC S.T.A.R. Puppy Certification, AKC Canine Good Citizenship if dog is ready.

The plan is to find a volunteer who will be willing to be the first 'owner' of a TMAU Dog, and there is an opportunity for someone to be trained by Liz as a SD Trainer if they wish, in the hope that someday there will be a specialized TMAU SD Trainer in the USA if the trial is a success.

The only initial expense MeBO will incur for our first TMAU Service Dog will be $130.00 to do vetting for the dog through their program (includes spay or neuter, Microchipping, parvo, distemper, bordetella, worming, frontline for a month and rabies...normally a cost of $300.00+).

Dogs have been used to detect gas leaks 20 feet below ground. The best human instruments could not.
If the TMAU Service Dog project is a success, we hope it would lead to an invaluable program for TMAU and other BO conditions sufferers in the US and abroad. If all goes well, perhaps service dogs can someday assist in the diagnosis of the various body odor/halitosis conditions of persons who test negative for TMAU by helping identify the composition of their odor. As Liz states below, "dogs can separate one odor into all its components. We smell beef stew, they smell potatoes, peas, carrots, etc."

Liz Norris has very kindly written a piece (see below) for this blog explaining to us how a Service Dog works. We hope you enjoy her write-up, and we thank Liz for her most bountiful generosity. She is very much appreciated by all of us.


MeBO Research

Trimethylaminuria Medical Alert Service Dog
Medical Alert Service Dog
What it can do for you
by Liz Norris

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Dogs work off scent. Here are some facts about dogs that many of you do not know:

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  Dogs primary ability - sense of smell.
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  Humans "see" at a glance - dogs, "scent" at a glance.
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  Humans acclimate to scent in a room - dogs never do, they fade scent they are not interested in to background "noise" like we do t.v.s, music, our work place sounds, etc.
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  A dogs nasal plane (outside of nose area) and nostrils stay moist so they can dissolve and release scent particles.
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  Every dogs nasal plane (nose area) is as individual as our fingerprint is to us. No two are alike.
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  Dogs have sinuses. They play a role in scent work detection.
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  Humans have 5 million scent receptor cells.
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  Dogs have millions depending on the breed (Doxies for example have 125 million while a Beagle has 220 million. The only breed and size of dog to have the same amount as the large German Shepherds who also have 220).
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  Dogs have a huge amount of brainpower devoted to scent (size of large walnut, matched to a humans pea size area).
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  Dogs can scent/smell under water thanks to the Jacobson Organ or vomeronasal organ in the floor of their nose.
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  A puppy can not see or hear when it is born due to these orifices being sealed. However, they can scent immediately. They use this to find mom, milk, litter mates, you and their surroundings. Called imprinting...the smell, matches the person, matches what is going on or happens.
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  Dogs can register the same scent for hours or even days.
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  Dogs can separate one odor into all its components. We smell beef stew, they smell potatoes, peas, carrots, etc.
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  Dogs can choose which odor/scent to concentrate on.
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  Dogs have been used to detect gas leaks 20 feet below ground. The best human instruments could not. In Ontario on a natural gas pipeline leak, over 90 miles of pipeline, dogs found 150 leaks (1974).
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  Dogs scent detect ability is so good they can pick a schizophrenic out of a crowd by tuning in on the apocrine gland sweat. This is the gland schizophrenics sweat from all the time.
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  Fear in people produces sweat from the apocrine glands. Hence the old saying of dogs can smell fear...they can. Regular work sweat is produced from a different body gland.
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  Bloodhounds are perfect scent machines. Built for it from head to toe. Bassett is second and designed for perfect scent work.
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  Squash faced dogs have more issues with scent detection thanks to man designing them this way.
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  Air scenting breed examples, collies, Dobermans, standard poodles, labs, goldens.

Why would this pertain to a TMAU person?

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  Because dogs have been used by mankind thru out history to do scent work. Hunting for example, tracking down prey or people, another example.
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  For over 50 years we have honed the dogs talents to do Search and Rescue, track criminals, track lost children, lost animals, and medical tracking uses (Diabetic Alert Dogs, Seizure Alert Dog, Blood Pressure Alert, Emotional Support Service Dogs, Post Traumatic Stress Disorder, etc.). Drug dogs, bomb dogs, first responder dogs, etc.
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  Dogs can be taught to find the "hottest scent" source on a human.
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  Dogs can be taught to tell the difference between your right hand scent and left hand scent. If you have a scent article you picked up with your left hand and laid it in the row or unscented from you, the dog should match the scented article to your left hand. Same with any body part. For example, I am right handed. Therefore I put more scent on an article with right hand than left because I touch more things with my right.

Dogs trained to do scent work must have a "high will to serve" not a, "high drive to power". Not all dogs will be suitable for service dog work due to their personalities and temperaments. Aggression is not acceptable. Towards people, dogs, anything. Training a service dog for guard protection work is not acceptable. Dogs that could care less about you and have a, "user" personality are not good candidates. They will do anything if something is in it for them, but when you need them, they could care less. Therefore, leave the choosing of a service dog to a professional. Make sure if you are working with a service dog trainer they use positive, motivational methods, not shock collars, choke chains, prong collars or slip collars. This is training by bully methods, intimidation methods and will shut the dog down.

If I have TMAU issues how can this help me?

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  Dogs can be trained to alert to a scent of any kind.
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  Dog can alert you before a human could smell you. Keeping you in a "safety scent zone".
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  Dog is trained to give a "physical signal" as its alert.
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  Tell me if the scent is really High or relatively Low (requires 2 signals physically from dog).
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  Service Dogs can go into any public place with you (work, ballgames, dances, sports bar, weddings, cruises, airplanes, hotels, etc.)
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  Backpacking Medical Related supplies, Cell Phones, Money, Credit Cards, Emergency Instructions for EMT personnel.
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  Respond to Panic Attacks by redirecting you to something else like stroking the dogs fur.
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  Assist Emotionally Overwhelmed in workplace or at home.
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  Public Fear Management Tasks.
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  Reduce fearful state of mind or hyper-vigilance.
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  Helping you cope with living alone and fear of intruders in home or on way to work or to parking garages.
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  Increase feelings of safety in Public
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  Provide emotional and spiritual support.
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  Lower your stress level leading to better health mentally and physically.

Before you jump on the Service Dog band wagon, ask yourself:

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  Am I ready for my medical disability to be public? By having a service dog and taking it everywhere with you and the sign on its pack that says, "Medical Alert Dog" you are saying to the public, "I have a disability".
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  Am I ready to care for a living, breathing thing each and every day of its life until death do us part?
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  Do I have the financial means to support the feeding, vetting and life of my service dog?
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  Am I willing to take the time to learn the training commands, scent work, Public Access Work, required canine manners that it takes to work a service dog in public?
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  Am I willing to keep the work up each day?
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  Do I want to live with a 3 year old for 14 - 18 years even though it can learn 300 plus commands and help change my life for the better?

The only 2 questions a facility may ask you:

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  If you are entering a restaurant, they can ask you, "is this a service dog".
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  You say, "yes it is".
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  They can ask you, "what does it do for you"?
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  You say, "it mitigates my medical disability".
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  End of story. They do not have the right to ask you what the mitigation is. That is telling them what your disability is and crosses over to your right to privacy.
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  If you do not care who knows what your medical disability is you can put TMAU Medical Alert Service Dog or Trimethylaminuria Medical Alert Service Dog. If you care about your privacy just go with Medical Alert Service Dog.

Examples of your rights under ADA vs. the Publics Rights:

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  You have the right to take your dog to hotels, motels, etc. You do not have to tell them it is a service dog coming. They can not charge you a pet room fee. It is not a pet. They can not charge you a cleaning fee. However, if your dog chews up the tables, eats the dresser, tears down the window sash, then you pay the bill and they have the right to charge you.
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  You have the right to take your dog into a restaurant and thru a buffet. Your dog does not have the right to get up, shake hair into my plate and slobber into my water glass. It must lay under the table out of site.
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  You have the right to take your dog to work with you. You do not have the right to let it jump on me, slobber on me, run around the office, etc. It must lay under your work station out of site and be invisible as possible.
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  You have the right to take your dog to school. You do not have the right to let it sniff people, nudge people, or interfere with anyone else in the school system.
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  You have the right to live in the same apartment building where I live (even if pet animals are not allowed, this does not matter. You have a service dog), but your dog does not have the right to leave poop all over the lawns and dig holes in the lawn or bark all night and keep me awake.
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  You have the right to shop in grocery store with your Service Dog, but it does not have the right to sample food, pee on things, eat off the displays, etc.

TMAU Awareness Day : 28th February

Sunday is International Rare Diseases Day, and the good people at rrr-tmau.org have taken the initiative to make it also a Trimethylaminura Awareness Day, including the option to donate to the NORD TMAU Fund. They are going to see how many they can get to donate to the fund and NORD will tell them the total. NORD does not disclose any personal information to rrr-tmau.org, so they do not know who donates unless you wish to disclose to them. Any contribution is welcome, from $1 to as much as you like.

The goal is to reach $30000 by October, in which case NORD will then make invitations for the money as a grant for research.

Cheryl Marshall has recently written more about the day and fund in the yahoo TMAU forum

Every penny counts- 1's, 5's, 10's whatever one can contribute adds up-please do not be shy about giving what you can.

NORD will tally the total dollar amount-I' m sure they may even be able to count the number of people who contributed as well- I will ask them for both numbers.

Much like the regular donation NORD NEVER reveals the names of the donors-We NEVER know who donates unless they reveal themselves. That is why I tell people that if they are donating and they want me to follow with NORD to make their donations are received they must tell me so when I call NORD I will have a name to ask for. Again let me say we will never know who the donors are.

Donations are accepted ANYTIME - it would be nice if we could get a large total for the 28th but if someone is unable to donate on that day - not a problem - send it later in the week.
http://health.groups.yahoo.com/group/Trimethylaminuria/message/3540

Cheryl

More about the ABCC11 gene that seems to cause natural hypohydrosis

Recently we posted about the ABCC11 gene, which seems to co-relate with naturally not being prone to underarm body odor (axillary odor). A sign of having the ABCC11 gene is that your earwax is the dry-type. This seems to be most common in far-east Asia. The following papers go into more detail about the gene. The hypothesis seems to be that it causes a natural hypohydrosis, which makes it more difficult for the axillary bacteria to thrive in the less moist environment. Although it is a 'loss of function' copy of the gene (a mutation), it is no surprise that in the communities where it first came about, now it has become the dominant type for that gene (e.g. mates have preferred those with the mutation. Now at levels of 95% of the communities.)

A functional ABCC11 allele is essential in the biochemical formation of human axillary odor

A strong association of axillary osmidrosis with the wet earwax type determined by genotyping of the ABCC11 gene

You can vote in our body odor polls again

One main aspect of the blog is to try to raise awareness of systemic body odors in any way we can; since apart from trimethylaminuria (which experts think of as 'fish odor syndrome'), no other type is accepted. Most people with a seemingly systemic sourced body odor usually say they have fecal and gas smells.

From the start we had polls in the blog (mainly in the sidebar), since they act as a good eye-catching 'snapshot' of the body odor community concerns, and may catch the eye of any passing expert. Unfortunately when we changed our blog address, there seemed to be a bug left in the polls, which meant they often lost chunks of votes at anytime. Poll 1, which is probably the most important poll, said there was about 200 votes, when in fact there was over 600 since the blog started. We reset them before to try and address this, but the bug continued.

This time we will create the polls in a different way in the hope the bug won't play a part anymore.

So, anyone who has voted before, you are welcome to vote again, with the hope that it catches the attention of any passing experts, and gives comfort in that you know you are far from alone with your body odor problem.

Man removed from Canadian flight due to body odor

Another body odor story hit the headlines this week. This time a man was asked to leave a plane scheduled to leave Canada due to others complaining of the smell. He was allowed on the flight the next morning. The theory must have been he could have a wash overnight. Of course this might not be of much use if his problem was systemic body odor, and outlines the impossible position both the sufferer and society are in with this problem. The answer is for society to come up with help for the problem.

CBC: Body odour: Passenger removed from AC flight. Correct move?

National Post : Man with 'brutal' smell ejected from from Air Canada flight

Change.org Petition about Rare Diseases

The following announcement from the Genetic Alliance is posted since trimethylaminuria is regarded as a rare disease. Please sign the petittion to tell Washington that it's time to care about rare diseases... All you need to do is go to this website, http://www.change.org/ideas/view/25_million_it_is_time_to_care_about_rare_disease and click on vote. You will get an email from them to the email address you give, click on the link in the email Change.org sends you, and your vote will count. Thanks for your participation in raising awareness.

The top 10 voted ideas will be presented at an event in Washington, DC to relevant members of the Obama AdministrationChange.org recently launched the 2010 Ideas for Change in America competition.

One idea is titled: 25 Million , It is time to care about rare diseases... You can read more and vote for the idea by clicking the following link:

Change.org petition

The top 10 voted ideas will be presented at an event in Washington, DC to relevant members of the Obama Administration, and then promoted to Change.org's full community of more than 1 million people. So we could have a real impact.

Thanks for the help!

Sharon Terry, President and CEO - Genetic Alliance

'Microbes and Us' Slide presentation by Dr. Irene Gabashvili

Microbes and us

View more presentations from Aurametrix.

IN addition to having a good time doing our trial run of Dr. Irene Gabashvili’s presentation, ‘Microbes and Us’, in Vokle live, chat, real-time e-mail, she has now posted for everyone to see these slides and Q&A transcript of the Live Online Webinar, which took place on February 12, 2010.

This transcript is very informative and particularly interesting as it identifies the normal bacterial flora of humans and where bacteria lives in our bodies, explains the types of microbes including intestinal microbiota responsible for IBS-C, IBS-D, IBD, Crohn’s disease, as well conditions that may be linked to microbiota, such as halitosis, hyperhidrosis, multiple chemical sensitivities, food intolerances (IBS, Celiac, TMAU, CFS), and more.

Dr. Irene Gabashvili, Founder of Aurametrix, Personal Health Management Systems, presents an in-depth discussion of microbes including Pathogenic Bacteria Database ‘Alphabetical List of Pathogenic Bacteria’, which has one of the most complete database of the species.

In this slideshow presentation, there is a section entitled ‘Diet Tidbits’ which addresses the most widely promoted prebiotics that have been suggested to increase the number of bifidobacteria and discusses the benefits of probiotics. This section also touches upon a very restrictive diet promoted as a way of reducing IBS symptoms, Crohn’s disease, Ulcerative Colitis and autism.

The final section includes the answers to the following webinar
audience’s questions:

• Why do people have Bacterial Overgrowth?
• Do bacterial populations in human body depend on genetics, environment?
• What kind of bacteria are TMA-producing?
• I heard that Solobacteria causes halitosis. Is it really so? (includes a list of ‘Halitosis-related bacteria’)
• What bacteria smell?
• Is heterogeneity of metabolic body odor sufferers hindering research?
• The collection of microbes for study must be a problem. Cross-contamination, etc.
• How do you get them?
• What is the most effective treatment to eliminate the desired bacteria: food or antibiotics?
• How often can we take antibiotics without causing harm?
• How does stress affect bacteria and enzyme deficiencies / pathways?
• How does stress affect intestinal permeability?
• Could a probiotic cleanse (sold on the market) help to flush us help to populate good bacteria?
• For many of us the diet is confusing would it be difficult to customize a diet for us?
• How long will it take to see diet results?
• What would be the ideal diet..Are proteins beneficial?
• Why some IBS patients have no odor while others do?
• Can FMO3 be genetically engineered into a probiotic?

We would like to thank all the participants who asked these questions and to our Pharmaceutical Scientist and owner of body odor support.com, Arun Nagrath, for participating in our live discussion session.

In spite of our technical ‘growing pains’ as we attempted to create this piece, all in all, we have acquired very valuable information from Dr. Gabashvili, to whom we are deeply appreciative for having helped us initiate this test webinar for the MEBO TMAU, Body Odor and Halitosis Webinar Series. We hope to hear much more from her as she has also so graciously volunteered to be the Overseer of MEBO Research’s exploratory study. On behalf of the body odor/TMAU and halitosis community, we thank you, Irene.


http://aurametrix.com
http://www.linkedin.com/in/igabashvili
http://sites.google.com/site/irenegabashvili/
http://www.biology.sjsu.edu/facultystaff/gabashvili.aspx

Resumed TMAU urine testing at University of Colorado Denver through Monell Center

As previously discussed, the urine testing process has resumed at UC Denver, with Monell being the coordinating center with regard to the collection, recording and processing. However, at this time, the Monell website has not yet been updated to reflect that information. Therefore, Dr. Preti has given his approval to publish his direct contact information for those seeking information on testing.

Please contact him directly, preferably by email, and someone will advise with regard to the procedure to follow to get the testing done:
email -- Preti@monell.org
phone: 1-267-519-4920

Thank you.

http://www.monell.org/contact_us/tmau/

.

Please allow 7 days for a response.
Please do not contact him by both email and phone.

Trimethylaminuria case to appear on UK TV show March 5th 9pm Channel 4

Last autumn a producer of the UK TV programme 'Embarrasing bodies' contacted the tmau.org.uk website to ask if anyone would volunteer to appear on the show this spring. tmau.org.uk has recently been contacted to be told a trimethylaminuria case will appear on the show on Friday March 5th. Dr Robin Lachmann will be part of the segment. Normally the cases on the show only have around 5 minutes each, so it is likely to be very short. But the body odor and halitosis websites can expect a bigger amount of visitors afterwards as people become aware of TMAU. We will try to get a copy of the segment for the blog.

Note : There will probably be a live webchat on their site afterwards

Test webinar yesterday : 'Microbes and us' by Irene Gabashvili PhD

Thanks to Irene for setting up and talking in the test webinar yesterday, and to everyone else who attended the test webinar (about 12 at any time). Irene gave a slideshow about the microbes that live in/on us for 30 minutes, and then answered a number of questions from the audience. Most were text questions, and Arun appeared direct on video to talk directly to Irene and the audience. Apologies to Arun, since there was a technical issue at this stage.

We were unable to record the presentation due to technical difficulties.

Vokle will not be the program used for hosting the other Body Odor experts, but for free it was a worthwhile event. Hopefully everyone enjoyed the event and of course anyone can host an event on Vokle for free at anytime.

Dr Irene Gabashvili webinar this Friday 2pm EST : Watch here, or join in

Thanks to all who attended

Note : To view the webinar you will need Flashplayer 10 installed. To check your current version: click here

Will you be watching ?

To ask questions at the webinar : Those attending can ask questions in the room by text or video. Those watching here or on the outside elsewhere can ask questions by emailing webinar@meboresearch.com

The 'Microbes and Us' event, by Dr. Irene Gabashvili, can be seen in its entirety right here in this post (no need to sign in or join). However, if you would like to ask a question, you would need to take the following steps:

1. Click on the big red 'Join Event' button and,
2. Login with your Twitter username and password, or your Facebook email address and password - or -
3. Register in Vokle and log in as a registered member
4. Join event #1287, http://vokle.com/events/1287
5. Click on the big red 'ASK A QUESTION' button, and follow the instructions. It might be easier to write the question in text form if you are having difficulty with your hardware setup.
6. A Screener will be receiving all the questions, compiling them, and will do all possible to present them to Dr. Gabashvili (time permitting).

We hope you enjoy this test webinar. It is hoped to be the first of many more to come.

The International Body Odor and Halitosis Webinar Series Committee

Tags: bacteria, yeast, microbiota genetics, sibo, mebo, ibs, ibd

Test webinar this Friday 2pm EST : Dr Irene Gabashvili talks about 'microbes and us'

Dr Irene Gabashvili webinar : Microbes and us
Friday 12th February : 2pm EST

Our bodies house trillions of microbes, thousands of bacterial species, protists, algae, fungi, molds and viruses. This talk explores the good, bad and the ugly about the invisible microbial world.
Hosted By
Irene Gabashvili PhD

As regular readers will know, we are currently trying out webinar programs for the upcoming International Body Odor and Halitosis Webinar Series by experts interested in this area. As many of you know, Dr Irene Gabashvili is already helping MeBO Research with the MEBO-Biolab Gut Dysbiosis Study, and now has kindly offered to test a free webinar program she found called Vokle. This Friday at 2pm EST, she will be talking about 'Microbes and Us'. The Volke webinar program was Irene's idea, and she has kindly scheduled a free webinar as a test trial. The webinar presentation topic will be most interesting in itself.

All are welcome this Friday 2pm EST to this test webinar. Having watched a previous Vokle webinar, it looks as if it can handle upwards of 150 viewers at the same time. Attendees will be able to communicate with us during the session via chat and using their webcam and/or audio. You can sign up now by clicking on the link above, or just turn up on the day. You would need to register for free on the Vokle account or you can use your twitter account.

We will still most likely rent a well-known webinar program for the main series of webinars, but this opportunity gives us all a chance to get used to the platform and to see how Vokle performs, while hearing the very interesting information that Irene will be talking about on microbiota genetics, bacteria yeast, SIBO, IBS, and IBD.

Our community thanks you, Irene, for taking this initiative.

Note : Anyone concerned about privacy could use false details when signing up to Vokle or use a twitter account with false details

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Related links :
Irene Gabashvili, Ph.D.
Aurametrix
http://www.linkedin.com/in/igabashvili
http://sites.google.com/site/irenegabashvili/
http://www.biology.sjsu.edu/facultystaff/gabashvili.aspx
Expert overseeing MEBO Research Studies Post

MeBO Research First Year Anniversary : February 5th, 2010

February 5, 2010 saw the first anniversary of MEBO Research, registered in England and Wales as a limited non-profit company. It hopes to become a charity, and it would need £5000 in assets to register as a charity in England. MeBO sees itself as a patient advocacy group on behalf of systemic body odor sufferers particularly by raising awareness and promoting research.

COMPANY INFORMATION

• MEBO Research, A Private Limited Company, Company Number 6810631 of The Registrar of Companies For England and Wales
• Dun & Bradstreet Data Universal Numbering System (D-U-N-S) for US Federal Government Contractors & Grantees 211521496
• NATO Commercial and Governmental Entity (NCAGE) Code U08S8
• Central Contractor Registration (CCR) Marketing Partner Identification Number (MPIN): M02052009
• North American Industrial Classification System 2007 (NAICS) 813212

It has been a busy year in 2009, getting the paperwork done correctly to establish this nonprofit organization. Nevertheless, it was deemed important to get the first 'special forces' study going, and this was started with the help of Biolab Medical Unit in London. The MeBO-Biolab Gut Dysbiosis Study was begun, with the volunteers kindly paying for their own tests. So far 5 results have been returned with more pending, and more volunteers applying to be tested. Part of the objective of this study is to encourage professional researchers to take a note of the results and perhaps give them ideas for research, as well as the study being useful in itself to each volunteer and other members of our community as patterns emerge from the results.

For the 2nd year, MeBO switched to a new 'official address' for £47 (per year), since the old one was more costly. Last year, Maria paid £89 from her own money for the address, but the renewal for the year 2010 for £47 was paid with the funds donated by the community, for which we are very grateful. A yearly address is needed to keep the company in proper legal standings.

Old address (2009):
Minshull House
Stockport, SK4 2LP
United Kingdom

MEBO Research's new address is:

145-157 St. John StreetLondon EC1V 4PY
England
UK 0800 0588015 / US 786 228-6880

So far £530/$862 has been raised, for which we are very grateful. One of the aims in 2010 is to reach £5000 goal to become a charity and hopefully register in the U.S. as well. However, if community opportunities arise, it may be deemed important to fund MeBO's causes too, as we invested £125 in the MEBO-Biolab Gut Dysbiosis Study, and an additional £902 needed to cover the cost of these tests were donated by the 5 volunteers for their own respective tests.

Donations will also be used for the upcoming International Body Odor and Halitosis Webinar Series, which will benefit the whole community for a long time to come; it will be free of charge to up to 1,000 attendees worldwide during each presentation. This webinar will cost MeBO £100 a month for the duration of the Series.

DONATIONS FOR THIS WEBINAR SERIES WOULD BE GREATLY APPRECIATED.

The more funds raised, the longer we can receive valuable presentations from the experts and thus increase our opportunity to fund raise for research grants and to raise awareness and understanding of our condition.

PLEASE HELP!

Your donations would be greatly appreciated by the whole community.

María de la Torre

Donate to MeBO Research

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Or go to your paypal.com account and send as 'gift' to
donations@meboresearch.org

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Nashville 2010 Meet-up: deadline for hotel booking

A friendly reminder for those interested in attending our meetup, you have only 21 more days to book a suite at the Embassy Suites Nashville Airport Hotel for the March 20th and 21st weekend. On March 1st, those suites not reserved will go back into the hotel inventory, and will then be offered at a higher rate to the general public.

The MEBO Research rate is $99/night for either a two double-bed room or a king-bed room, including a full daily breakfast, 2-hours daily Manager's reception, and airport shuttle service per person.

If you haven't booked your suite yet, or have booked it at a higher rate, you can change it to the MEBO Research rate by giving the following special account code:

Group/Convention Code: MBR

This rate is available for up to 20 suites on the 19th 20th and 21st of March, and is extended, subject to availability, two days before and two days after as well.

So far, approximately 20+ people have booked to attend from all over the country and from London.

WHY DO WE MEET-UP?

The USA community is ready to experience the transformation that comes with the special bond created with a 'pilgrimage' to a meetup. As Arun Nagrath tells us in his video recorded during the London, Thames 2009 Body Odor & Halitosis meetup (see video in right sidebar),

...we had discussions, very intriguing, intellectual discussions, very spiritual discussions, and very emotive discussions that really touch the heart that made you realize and feel as if you were actually looking into a mirror and talking to someone whose experiences have been exactly what you've been going through. And it was so touching inside...we started to bond, and I can see those feelings of depression, of anxiety, of hopelessness, just fade away, and I can actually see a sense of utter calmness in their voice in their appearance - all this in the space of one day...as if we've been through some kind of magical emotional healing experience...

Everyone from around the globe is invited to experience with us our Southern style reunion in our first Annual Body Odor and Halitosis USA Meetup in Nashville, Tennessee.

Nashville meetup 2010 : are you interested in attending ?

Accomodation preference

TMAU day : 28th February

Rare Disease Day US: Alone we are Rare.
Together we are Strong.

The RRR campaign managers are joining NORD and celebrating the International Day for Rare Diseases on Sunday, February 28, 2010. We are also declaring Sunday February 28, 2010 as the first ever:
International Trimethylaminuria (TMAU) Awareness Day and International medical malodors Awareness Day.

We are joined by the TMAU community and our supporters:
MEBO Research
The Trimethylaminuria Foundation
The NY/NJ/CT TMAU support Group
The Trimethylaminuria Yahoo support group

If you have TMAU, suspect you do or are a supporter of someone who does, join us in raising awareness and funds for meaningful research proposals through our established TMAU Research Fund at NORD. As a community, as of January 14th we have raised $9585.00. We set out on October 1, 2009 to reach a goal of $30,000 in 1 year to jump start some meaningful TMAU research work and we are proud to say that we are on our way there.

February 28th is a great day to push forward. To participate on this day, please make any donation amount you or your supporters can give. (Even if it is a dollar!) It will be exciting to see how many people we can get involved in this process!

NORD will give us the total of all donations made online that day as well as checks mailed in the week prior and following. More exciting, NORD will give us the total amount of people that donate that day! As the NORD slogan states, “Alone we are Rare. Together we are strong.” ITD will be a day in which we can all reflect on the struggles and the victories that we, both individually and as a community face. Let this year serve as the benchmark so that in future years we can have a point of reference of how far we have come. How many people can we ask to support us in our effort to get research started for TMAU!

To Donate online:
•Go to http:www.rarediseases.org
•Click on Donate Now
•Enter donation amount or choose other amount
•Under “In Honor of,” please type the following for rare Disorders”
TMAU Restricted Research Fund
•Click on View cart, Checkout. Then proceed to checkout.
•Please type on your address and billing info and click “Checkout”
•NORD will mail you a letter confirming your donation to the TMAU Research Fund which can be used for tax deduction purposes in the U.S.

Mail to:
•Write a check with your chosen amount to “National Organization for rare Disorders”
• Under memo write “TMAU Restricted Research Fund.”
• Mail check to NORD 55 Kenosia Avenue PO BOX 1968 Danbury, CT 06813-1968

For more info. Please go to http://www.rrr-tmau.org

The MeBO Research International Body Odor Webinar Series taking form

As mentioned previously, it has been decided not to schedule the full MEBO TMAU, Body Odor & Halitosis Webinar with the upcoming Nashville meetup 20-21 March, but instead to invite speakers to a series of separate webinars where everyone can watch from home, and there will be no time constraints. The meetup will launch this program with relevant topics of discussions and the opportunity to compile questions to raise to our experts prior to their respective presentations.

We have invited most of the experts who were at the TMAU 2002 workshop and are known to have an interest in FMO3 enzyme and TMAU. We are pleased to announce that the response has been very positive, and so far those who have kindly agreed to our initial series of webinars are :

Dr. George Preti, Monell Center, Philadelphia, USA
Dr. Paul Fennessey, University of Colorado Denver,USA
Dr. John Cashman, Human BioMolecular Research Institute (HBRI), California, USA
Dr. Eileen Treacy, Childrens University Hospital, Dublin, IE
Dr. Ian Phillips, Queen Mary University, London, UK
Dr. Elizabeth Shephard, University College London, UK
Dr. Irene Gabashvili, San José University, oversees MEBO's Research Studies, California, USA

We are most grateful and uplifted by the enthusiasm of the experts to wish to communicate with the body odor community. Initially, the first series of webinars will mainly involve experts associated with TMAU/FMO3, but it should be kept in mind that the FMO3 enzyme deals with many sulfides and amines, and so there may be a connection yet to be proven. Also, many of the experts have great knowledge in the whole set of biotransformation enzymes (xenobiotic enzymes), and some have expertise in other metabolism problems.

No scheduling or fixed plans have been made yet. The provisional plans are to use the gotowebinar software to host the webinars, which will allow up to 1000 guests to view the presentations. The series of webinars are likely to start late March or early April, and although a day hasn't been decided, it seems likely that a Sunday would accommodate most world timezones and suit the experts (?). We also hope to record and host the webinar videos on our website, if the experts give permission (possibly edited).

The format of the webinars is provisionally planned as breaking the presentations into 3 phases: Phase 1 would be the host introducing the guest who would then give a presentation. Phase 2 would be agreed written questions asked by the host or other people or a similar format, and Phase 3 would be the audience asking questions by text or by audio (scheduled via a coordinator). Nothing is decided yet.

To view the webinar, most people's computer systems will be ready to view it with no problem. To participate, anyone should be able to send chat messages. Anyone wishing to speak to the expert would need to have a mic. A cheap headset would do. All questions would be moderated and queued, such as radio stations use. It will be free for everyone.

The program costs $100 a month, so the plan is for MeBO Research to take the program for 2 months, and then it will depend on circumstances. Possibly the webinars could continue in some way with guest experts from various areas of the body odor and halitosis field.

We hope have it up and running in time for the Nashville meetup, and perhaps some of the people who couldn't attend Nashville can join us at a set time to chit chat with us. Anyone would be able to join in by video/audio with a webcam and microphone, or with just a microphone, or on the chat line. Or perhaps we could have an international online get-together to try it out. We'll see if we can get it all set up to try it out during the meetup. If all goes well, we'll be able to start our International Body Odor Webinar Series with the experts in the days and weeks to follow.

We will keep you regularly updated about the plans.

Notable body odor associated medical papers by the guest experts : (to follow)
Dr Cashman : Transient trimethylaminuria related to menstruation
Dr Treacy : Trimethylaminuria and Deficiency of Flavin-Containing Monooxygenase Type 3
Drs Phillips/Shephard : Gene Reviews entry for Trimethylaminuria
Dr Preti : Genetic influences on human body odor: from genes to the axillae
Drs Fennessey, Cashman et al : Biochemical and clinical aspects of the human flavin-containing monooxygenase form 3 (FMO3) related to trimethylaminuria

Reply from Dr. Jennifer L. Greenberg, PSY.D., RE Survey

I have received a reply from Dr. Jennifer L. Greenberg, Psy.D., OCD and Related Disorders Program, Massachusetts General Hospital and Harvard Medical School, http://www.mghocd.org/, in which she acknowledges that "body odor concerns are understudied and not very well understood at this time...We are very hopeful this will lead to a collaborative effort that will help us all better understand the varying types of body odor concerns and those who suffer."

This is not a treatment study, but rather, our goal in conducting this research is to simply learn more about the symptoms and experiences of individuals with body odor concerns.I will let her email message speak for itself, and post it here with my reply to her below. Each sufferer and family member is welcome to make his/her own personal decision whether to fill out the survey, http://www.surveymonkey.com/ORSSurvey, and to email her any additional comment or information, as she is welcoming it. Please note the personal information disclosure at the beginning of the survey. You may opt to not provide this info online, and provide it later by other means.

Dear Maria,

Thank you for contacting us regarding our survey. As you know, body odor concerns are understudied and not very well understood at this time. We are very excited by the mutual interest and discussion generated by our survey. We are very hopeful this will lead to a collaborative effort that will help us all better understand the varying types of body odor concerns and those who suffer. This is not a treatment study, but rather, our goal in conducting this research is to simply learn more about the symptoms and experiences of individuals with body odor concerns. For some individuals, the source of the body odor may be a diagnosed (or undiagnosed) medical condition; however, for others, no perceivable body odor is emitted, yet they spend hours/day worried about a perceived odor. We believe that all individuals with body odor concerns may suffer immensely with worry about the odor (or perceived odor) and its impact on their social/school/work life. In filling out the survey, we welcome your readers to write in about their specific symptoms, treatment experiences and/or medical diagnoses in an effort to help us better understand their experiences.

We hope to learn more about these various experiences, and look forward to a continued, fruitful dialogue.

Best regards,
Jennifer L. Greenberg, Psy.D.
OCD and Related Disorders Program
Massachusetts General Hospital
http://www.mghocd.org/

My reply to Dr. Greenberg:
(cont.)

Dear Dr. Greenberg,

I am so encouraged by your email. I will post it in my blog and in the forums to encourage all to give you feedback. Thank you so very much for your very compassionate and understanding position. Yes, we all suffer at a very deep level for years on end, with no hope in sight. I am certain that with better medical diagnosis of the causes of odor, we would be able to keep our mental and emotional focus in check, but all this uncertainty only triggers the most torturous and tormenting fears and totally disrupts not only our social life but also our ability to maintain employment, many college graduates give up and abandon their careers as the odor is a major obstacle, and even worse, some bright and inspired college students drop out because they can't stand the verbal attacks from not only classmates but even some professors.

Again, THANK YOU, for looking in our direction. If there is anything I can help you with in your studies, please don't hesitate to let me know. We are all so hopeful in that you would seek to understand our emotional/mental state and perhaps write an article or two in the professional journals to explain it to the rest of the mental health community???

Warmest Regards,


María de la Torre
Director
MEBO Research
http://www.bloodbornebodyodorandhalitosis.com/
786 228-6880

P.S. I leave you with a quote from one of our posters:


Hi TMAU sufferers
I was diagnosed in 2005 after 20 odd years of not knowing what the cause was.It took a long time for me to pluck up the courage to seek help, though at the time GP was unhelpful as he thought it was all in my head and I was just paranoid.
I was in a relationship for 20yrs and my partner was unable to smell any offensive odour and by the way neither can I, which is frustrating and therefore difficult to establish if anything ie food stress sweating makes the condition worse.
I did eat fish last time about 20 years ago and I could smell it in my nostrils if I took a hard short breath through my nose and my father did comment that he could smell fishy odour.No surprise I didn't eat fish again apart from once testing if it happened again and the smell was not present in my nose.
I think it is very different for each individual
The only comments I have ever had are when I have been at work like in my presence, What's that smell? to aftershave being sprayed on me and a wash bag being thrown at me.
It makes you feel embarrassed, ashamed, angry,paranoid,frustrated and you just want to return to your home and not go out again.
I do think that my condition is not as bad as other TMAU sufferers and I am able to still be employed as my job involves travel and I work with different people almost all the time and not in an office environment with the same people
It is a struggle and I am always on my guard and only truly relax when I'm at home.
The biggest relief for me was finding out that I wasn't going mad and just paranoid and that I do have a metabolic disorder.
Hopefully I will get to chat to you at some stage and thank you for reading my story lots more to say but I think enough for now.

Hugs

María de la Torre
President and Chief Executive Officer

www.meboresearch.org
maria.delatorre@meboresearch.org

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UPDATE, 07 JANUARY 2011: See post, 'Exciting changes in Mental Health Field re Olfactory Reference Syndrome' Our efforts bore great success for our community, and now we need to disperse this new information amongst all mental health therapists as we continue with our Raising Awareness Campaign.

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TMAU genetic testing in Spain

This lab looks for mutations in the FMO3 gene, and if they cannot find any, they proceed to look at other TMAU or other body odor related genes: SLC22A1, DMGDH, SDH, FMO1.We are most grateful to a member of our community, Natalia (Nata_80/Jersey), who has done us the favor of obtaining important genetic TMAU and FMO3 testing in Valencia, Spain, at the Hospital Clínico Universitario de Valencia, Instituto de Investigación Sanitario, Fundación Investigación Clínico de Valencia (INCLIVA) headed by Dr. Javier Chaves. Nata relays the following information:

This clinical hospital in Valencia is doing genetic analysis of this condition [TMAU]. It also accepts and analyzes samples from other countries.

The lab looks for mutations in the FMO3 gene, and if they cannot find any, they proceed to look at other TMAU or body odor related genes: SLC22A1, DMGDH, SDH, FMO1.

These tests require a physician referral (public or private, who would need to assume the cost of these tests)…

Contact information:

Unidad de Genotipado y Diagnóstico Genético
Fundación Investigación Clinico de Valencia-INCLIVA
AVDA Blasco Ibañez 17
Valencia 46010
telefono: 963862664
fax: 963862665
email: a.barbara.garcia@uv.es

PLEASE NOTE that TMAU urine tests are not done here, although measures to set up this type of test are underway. Normally, in the TMAU diagnostic process, the urine is tested first, and if there is an excess of TMA, the gene test is then performed. I don’t have any knowledge of other labs in Spain that do urine tests. However, there are labs in other European and American countries. Perhaps they will receive samples from other countries.

Additional information provided by Ana Barbara Garcia of the Unidad de Genotipado y Diagnóstico Genético [The Genotyping and Genetic Diagnostics Unit]:

Yes, we perform genetic diagnosis of trimethylaminuria. However,
samples should be sent from a hospital or medical practice.

The procedure of this diagnosis involves 3 steps, although you
may decide to perform all of them or only the first:

1- FMO3 gene analysis: Most mutations responsible for the disease have
been described in this gene. The cost of this analysis is (350€)

2- If no mutations have been found in step 1, we propose to analyse 2
other genes, where some mutations have been found: SLC22A1 (500€) and
DMGDH (600€).

3- If no mutations are found: we propose to analyse 2 genes. They have
a role that make them good targets responsible for the disease:
SDH (750€) and FMO1 (400€)

If you are interested, I would email your medical doctor the instructions and all the documents that should be filled.

Thank you very much for your interest.

Sincerely:

ANA BARBARA GARCIA

********************************
ANA BARBARA GARCIA GARCIA

Unidad de Genotipado y Diagnóstico Genético
Fundación Investigación Clinico de Valencia-INCLIVA

AVDA Blasco Ibañez 17, Valencia 46010

telefono: 963862664
fax: 963862665
email: a.barbara.garcia@uv.es

En español