MEBO-Eliapharma TMAU Testing Update and next batch of tests

Even as we wait for the results of the 38 specimen of the 1st batch analyzed by Eliapharma, we already have an additional 12 samples for the next batch.

At this time, Eliapharma is writing the reports of the first 38 samples received for TMAU Testing for Primary TMAU, Secondary TMAU, or negative results.

Urine Creatinine Test: In addition to TMAU testing, Eliapharma is analyzing each sample to measure urine creatinine concentration levels to act as the reference point for measuring TMA and TMAO. This is something also done by Nigel Manning in the UK, as noted in his paper, TMAU - diagnostic testing at Sheffield Children's Hospital, which Nigel wrote for MEBO's Meetup in Nashville 2010.

A urine creatinine concentration level test can be done on its own or with other tests that determine the relative amounts of other substances being excreted in the urine. High creatinine levels indicate a pure test, whereas low amounts of creatinine in the urine indicate an altered test perhaps by drinking excessive amounts of water or taking medication containing diuretics. This additional measure to test the creatinine concentration in each specimen serves to ensure that the urine samples are of good quality. Normally, this test is done as a screening test to evaluate kidney function, but also to provide information on other chemicals in the urine such as albumin or protein.

Even as we wait for the results of the 38 specimen of the 1st batch analyzed by Eliapharma, we already have an additional 12 samples for the next batch. In addition, so far 5 people have expressed interest in providing a sample during the Washington DC Meetup on the weekend of the 9th and 10th of April, and others might decide to do the test as well once they’re at the meetup. So, by mid April, we should have close to 20 samples, and hopefully complete the 30 required to run the test by early May. As per our agreement with Eliapharma, the lab will analyze approximately 30 samples at a time.

If you would like to test in our MEBO International TMAU Testing Program, please fill the test following, MEBO-Eliapharma TMAU Test Requisition/Survey Form.

We are looking forward to receiving the results of this first batch of 38 samples sometime this week.

María

María de la Torre
President and Executive Director

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

---

Raising Awareness Campaign in UK General Medical Council and others, Part 2

PLEASE HELP!

SUFFERERS FROM ALL COUNTRIES
ARE INVITED TO PARTICIPATE IN SOLIDARITY
AS AN INTERNATIONAL COMMUNITY.

If anyone has not participated yet simply because you may not know what to write, where to begin your story, or because your story is simply too painful to put into words, I invite you to copy and paste the 3 paragraphs below, and email them to the links below. We already have a good Testimonials sent to these entities, and it is better that you send this information below than nothing at all. DON’T FORGET TO SIGN IT with your own name or a pseudonym (Please make it sound like a real name).

If it helps you feel more supported by identifying yourself (first name with the initial of your last name) as being part of an international movement, you can use the MEBO Research signature. It is OK to either do so, or to just sign it individually. Copy and paste it as you like.

RE: To Raise Awareness in the Medical Community of life-devastating body odour medical conditions; to pursue funds for research

To whom it may concern:

Would you please assist us in raising awareness in the medical community, so that when a physician sees a patient presenting with a body odour, he or she would have heard of Trimethylaminuria and be aware of systemic body odour conditions, and would know which tests to prescribe, and which experts to consult with for additional information?

Would you please assist us by referring us to individuals, private organizations, or government entities that we could turn to for research funding into Trimethylaminuria and any other body odour conditions?

Your kind assistance in this matter would be greatly appreciated.

Respectfully yours,

(Your name or pseudonym: a First Name and Initial of Last Name)
MEBO Research Group
www.meboresearch.org
0800 0588015UK
(786)228-6880USA

LINKS TO WHERE YOU CAN EMAIL THIS MESSAGE:

Linda.Willmott@headoffice.mrc.ac.uk

education@gmc-uk.org
publications@gmc-uk.org
gmc@gmc-uk.org
gmctoday@gmc-uk.org

bma-library@bma.org.uk

education-courses@rcplondon.ac.uk

thismorning@itv.com

---

---

Raising Awareness Campaign UK General Medical Council and others

The following email was sent from MEBO Research to the Medical Research Council, GMC Education and Training Committee, British Medical Association, Royal College Physicians, and Dr. Chris Steele from , as part of the Raising Awareness Campaign in the UK on 28 March 2011.

In solidarity with our UK members of persons with metabolic body odor conditions, many members of our international community are writing today, Monday, 28 March 2011, to you and to others listed below to implore you to please take notice of the much ignored and abandoned people who suffer from uncontrollable, life-devastating body odour conditions, one such condition being Trimethylaminuria, for example, We ask that you join us in our pursuit to obtain much needed research funds.

Please see the attached Testimonials some of our members have asked me to present to you today for this purpose, and other testimonials you will receive in separate emails and in the post, in which we attempt to portray the very serious psycho-social consequences of living with these conditions without hope for treatment due to a total lack of awareness in the medical community of these conditions and due to lack of research funding.

In an effort to unite sufferers from around the world with the experts mentioned below and other experts, with the purpose of raising awareness and promoting research, I have founded a Not For Profit, Limited by Guarantee Company, aspiring to become a Charity, MEBO Research, incorporated on February 5, 2009, Company Number 06810631 of The Registrar of Companies For England and Wales.

Even though we are most grateful to the renowned British experts noted below who have researched into the genetics, metabolic deficiencies, and other causes of body odour conditions,

1. Nigel Manning, Principal Clinical Scientist of Dept. Clinical Chemistry at Sheffield Children’s Hospital. Please refer to his interview in MEBO’s Blog and other educational material he has given us
2. Dr. Robin H. Lachmann, PhD, MRCP, Consultant in Metabolic Medicine, Charles Dent Metabolic Unit, National Hospital for Neurology and Neurosurgery, Queen Square, London. Please see his interview in MEBO’s Blog.
3. Stephen Mitchell, Biomolecular Medicine, Faculty of Medicine, Imperial College London, South Kensington, London.
4. Robert L Smith, Imperial College School of Medicine, Department of Molecular Toxicology, Div of Biomedical Sciences, South Kensington, London.
5. Mark Howard, Manager of Biolab Medical Unit, Nutritional and Environmental Medicine, London. (Please see his interview and Study in MEBO’s Blog)

as well as to other experts in other European countries, the United States, Canada, Australia, Japan, New Zealand, and other countries, we are cognizant of the barriers they have repeatedly encountered in their research efforts due to total lack of research funding that could potentially allow them to discover not only a cure for trimethylaminuria, but to also to help them identify, diagnose, and find a cure for other types of genetic metabolic disorders that produce socially unacceptable, career-destructive, and serious psychological damage.

Operated strictly by volunteers from around the globe united and organised through MEBO’s Blog, Bloodborne Body Odour & Halitosis and other international, multilingual forums noted on the Community Involvement page of this blog, MEBO has been a very pro-active company not only in the UK, but also in the United States, Canada, Latin America (see Spanish Blog), Australia, and other countries. Our primary aims have been,

1. To raise awareness in the medical community of the serious psychosocial consequences caused by body odour conditions by writing testimonial letters and emails to you and other government and private entities,

2. For the medical community to become well versed on this topic to better care for their patients by arranging the necessary testing and treatment,

3. To pursue funding for the much needed research to find the proper treatment and cure,

4. To organise Raising Awareness Campaigns such as this one today with you today, as well as other entities listed below, such as the Councils, Medical organisations, and the press listed below in pursuit of educational support in the medical community, and financial support in the scientific community to initiate much needed research.

Medical Research Council
Linda Willmott 020 73952312
14th Floor
One Kemble Street
London WC2B 4an
Linda.Willmott@headoffice.mrc.ac.uk

General Medical Council 0161 9236602
Education and Training Committee
Jane Dalacre
350 Euston Road
London NW1 3JN
education@gmc-uk.org
publications@gmc-uk.org
gmc@gmc-uk.org
gmctoday@gmc-uk.org

British Medical Association
BMJ/BMA News (weekly publication for doctors)
bmj.com 020 73874410
bma-library@bma.org.uk

Royal College Physicians
Professor Humphrey Hodgson (has published papers on liver disease)
11 St Andrews Place
Regents Park
London NW1 4LE
education-courses@rcplondon.ac.uk
02030751539

Dr Chris Steele
This Morning 11th floor
London Television Centre
London SE1 9LT
thismorning@itv.com
08000304044

Would you please assist us in raising awareness in the medical community, so that when a physician sees a patient presenting with a body odour, he or she would have heard of Trimethylaminuria and be aware of systemic body odour conditions, and would know which tests to prescribe, and which experts to consult with for additional information?

Would you please assist us by referring us to individuals, private organizations, or government entities that we could turn to for research funding into Trimethylaminuria and any other body odour conditions?

Your kind assistance in this matter would be greatly appreciated.

Respectfully yours,

María de la Torre
President and Executive Director

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

Below is my personal testimony that I sent to all the links noted above:

FROM: Maria de la Torre, MEBO Research Group
TO: Linda Willmott, Medical Research Council
DATE: 28 March 2011
RE: Testimonial to Raise Awareness in Medical Community of life-devastating body odour medical conditions

As a 54 year-old married mom of two sons, I have personally struggled with severe body odour in my family for the past eight years without finding answers from numerous well-intentioned medical doctors, including gastroenterologist, dermatologist, allergy and asthma specialist, and othorhinolaryngologist. As a result, I had no other recourse but to turn to the web to find guidance and answers.

After having read numerous research articles online from around the world, heart-wrenching posts by body odour sufferers in many Body Odour/TMAU forums, and after watching various news and talk shows regarding this matter, it seems to me that most cases don’t fit the traditional idea of body odours as being an external skin or localised oral problem. By that I mean that it is bloodborne and going through the whole system, to be released through the pores and any other way it can. I am also amazed at the numbers posting on the various body odour boards. It seems as if it is far from a rare problem, although it seems to vary in degrees.

I began to see a pattern emerging in numerous parts of the world suggesting that body odour is a medical condition that usually arises from more than one cause in each individual sufferer, such as metabolic and/or gut bacterial imbalance, and possibly other causes yet to be discovered, many of which may be genetic in nature. These multiple causes in one individual sufferer may vary from another sufferer, thus making it extremely difficult if not impossible for sufferers to find a lasting solution to their particular body odour condition without additional research and professional guidance.

Finally, for the first time in 8 years, I found literature written by experts of many countries explaining the medical conditions that produce body odour conditions, and as sufferers began to unite from around the world, we began to inform each other about which very few labs actually test for Trimethylaminuria, and the very “primitive” management protocols used to attempt to control its symptoms, though not always effective.

What was most striking to me is that most everyone on the body odour Boards claim that their respective medical doctors had no idea about the cause or nature of body odour conditions, and most had to print online professional literature to take to them to teach them about it. There is a breakdown in communication in the medical community that must be addressed. Even though much more research is needed to identify, understand, manage, and cure all types of body odour conditions, all efforts by Medical Councils must be made to disperse the existent information to each and every medical http://www.blogger.com/img/blank.gifphysician.

María de la Torre
Founder and Executive Director
MEBO Research

Please see Part 2 here

International support needed for UK TMAU sufferer's Raising Awareness Campaign

Today is the last day we, as an international community, can unite with the London TMAU sufferers spearheaded by Karen James, who met on Friday 18th March to write a brief testimonial asking the UK Medical Research Council, General Medical Council, British Medical Association, Royal College Physicians, and more to simply Raise Awareness. You can find ideas of what to write about in your testimonial from the thread (pages 1 and 2) started by the group leader, malory, in the Body Odor Support Forum.

Our community is so very much stuck in a loop that has become such a monumental obstacle to break, and here is a 'loop' that we seem to be 'stuck' in, and anything you write that can help break this loop would be a great accomplishment.

--> Little is known in the medical community about BO conditions, including TMAU, due to lack of funding for research

--> doctors dismiss us as delusional without pursuing tests (only TMAU test exists), because they are not informed about uncontrollable body odor conditions not related to diseases, intermittent strong body odor conditions, and how only a certain percentage of the population detects the odor and react strongly in an aggressive manner against the sufferer

--> only very few sufferer find ways on their own to test (only TMAU test available in few places in the world and is costly). Persons suffering from body odor conditions that test negative for TMAU have no other test to turn to for answers because they have not been designed due to lack of funding for research

--> little is documented on TMAU and other BO conditions

--> companies don’t want to invest in researching and developing devices and treatment options for our community without more data that justifies the expensive research regulated by government agencies

--> brings us back to the beginning of this cycle…

We need to let them know that we exist in greater numbers than they think, except that we are "under-researched" and "under-tested."

Everyone is invited to copy and paste anything said in the Body Odor Support forum and in MEBO's website and/or Blog to write to these organizations. All we have to do is to send it to malory today, and she'll submit it as a group effort. This is our opportunity to break this loop. Let's make our presence felt!

María

Looking for two TMAU1 volunteers for free TMAU testing in the UK

On Friday, Mar 25, 2011, a poster in the tmau.org.uk forum, under the topic "2 TMAU1 volunteers for TMAU testing" by PoetFire, announced that there is a university lab just south of London that is interested in adding TMAU to its list of clinical diagnostic tests using NMR technology.

The lab is looking for 2 people who have already tested positive for Primary TMAU in order to test them without charge using this NMR equipment.

Anyone interested in participating in this program, please contact the poster in this forum.

María

Eliapharma analyzing first 38 samples & follow-up treatment recommendations

On March 21, 2011, Eliapharma began analyzing the first 38 urine samples received primarily from Canada and United States to test the levels of TMA in the urine, TMAO levels, and Creatinine levels. The interpretation of the results will be Primary TMAU, Secondary TMAU, or negative for TMAU. Both Primary and Secondary TMAU are discussed in an article entitled, Trimethylaminuria, in the U.S. National Library of Medicine, National Institutes of Health, under the subheading, ‘Differential Diagnosis.’

HOW WILL THE TEST RESULTS BE HANDLED

MEBO and Eliapharma will not only provide the test results, but in addition, will also provide a letter addressed to the physicians explaining both types of TMAU and the treatment indicated. The patients who tested positive for either, Primary and Secondary TMAU, can take these documents and discuss them with their physician. To facilitate communications with your physician and to allow him or her time to research TMAU, MEBO recommends that you first mail a copy of these documents to your physician before your office visit.

INTRODUCING THE USE OF A

"SECONDARY TMAU TEST RESULTS"

IN THE WESTERN HEMISPHERE

We are very excited to provide sufferers who have normal TMAO levels (indicating normal metabolic enzyme function) but high TMA level in the urine, with a Secondary TMAU test results whenever applicable. It has been customarily been the case in the Western Hemisphere to give a negative TMAU test result if the TMAO levels have fallen within normal range, thus indicative of normal metabolic enzyme function, even if TMA levels are high. This is because initially, only the genetically caused high levels of trimethylamine in urine was the focus of research attention.

As a result, body odor sufferers with high levels of odorous TMA in the urine (and perspiration, saliva, and other body fluids) were diagnosed negative for TMAU and consequently, lumped together with those who have normal levels of TMA. Unfortunately, this left the person with TMA odor to go back into society without any medical recourse, and was also frequently told to go to psychotherapy for suffering from delusions and given psychotropic drugs.

NOW, SECONDARY TMAU TEST RESULTS
should help relieve this very unfortunate predicament.

For a few years now, the Secondary TMAU test result, customarily used in the UK, has offered sufferers the same opportunity for medical treatment benefits as those with Primary TMAU. Just like the sufferers in the UK diagnosed with Secondary TMAU, the sufferer in the Western Hemisphere will now have the opportunity to be treated with antibiotics, as recommended by the following experts in their interviews and publications.

1. Nigel Manning, Principal Clinical Scientist, Dept. Clinical Chemistry at Sheffield, Children's Hospital, England, where all NHS and some private lab's TMAU tests are done in the UK,
2. Dr. Robin Lachmann, PhD, MRCP, Consultant in Metabolic Medicine, National Hospital for Neurology and Neurosurgery in London
3. Ian R. Phillips, PhD., Professor of Moelcular Biology, School of Biological and Chemical Sciences, Queen Mary, University of London
4. Elizabeth A Shephard, PhD, Professor of Molecular Biology Dept. of Molecular Biology, Dept of Biochemistry and Molecular Biology, University College of London, and other experts, followed by subsequent monthly to bi-monthly urine tests which invariably showing a significant decrease in TMA levels resulting from treatment.

As noted in the interviews and documents linked above as well as other professional publications, and in MEBO’s blog, it is widely recognized by TMAU experts in the United Kingdom that Secondary TMAU could very likely be a result of an overgrowth of TMA-producing bacteria in the gut. Experts explain in the blog and other professional publications that as the patient is treated with the proper antibiotics for the proper amount of time, TMA in the urine is significantly reduced, as has been repeatedly shown in follow-up urine tests.

This opportunity to obtain a diagnosis that gives a clearer and precise indication to the physician of what TMAU is, and the appropriate treatment for it, provides the patient with a better opportunity to control his or her TMA-produced odor symptoms. MEBO has been pursuing and will continue to pursue all avenues for sufferers all around the world to receive the proper diagnosis and treatment for TMAU as well as other types of body odor conditions. Now, for the first time ever, it will become standard procedure for a lab, Eliapharma, to consistently document Secondary TMAU test result to everyone qualified in the Western Hemisphere. MEBO is elated to say that Eliapharma has begun specifically testing for both, Primary and Secondary TMAU in all 38 urine samples they have received from members of our community.

MEBO Research and Eliapharma would like to thank the participants of the MEBO Test Program for testing through us. Being a research lab, Eliapharma joins MEBO in doing all possible to pursue much more in-depth testing and research into not only TMAU, but other body odor conditions as well.

A CALL FOR A “UNVIERSAL STANDARD”

OF TMAU TEST INTERPRETATION

Most sufferers from around the world are well aware that each lab arrives at the same figures of TMA, TMAO, and Creatinine levels, when testing urine samples; however, most labs in the world use a different scale to determine whether a person suffers from TMAU or not.

In fact, through time, some labs have been re-adjusting their standards, and currently determine a urine sample to be TMAU positive at a certain level in which in the past, it may have received negative results. As difficult to believe as it may be, the scientific and medical fields have had very little advancements at all regarding body odor conditions due to little research funding. Sufferers united under MEBO and other body odor organizations have had to take matters into our own hands to promote research and to raise awareness.

TESTING PLAYS A SPECIAL ROLE IN
THE RAISING AWARENESS CAMPAIGN

Through our MEBO International TMAU Test Program, we are inadvertently raising awareness in the medical community on TMAU and other body odor conditions, as well as [b]attempting to promote a Universal Standard of Interpretation of TMAU test results[/b] from all labs around the world. For this reason, to maintain consistency, MEBO and Eliapharma have chosen to follow the same interpretation test measurements used by Nigel Manning, in Sheffield, where all NHS and some private labs perform all their TMAU tests in the UK, and where both, Primary and Secondary TMAU are routinely checked. We hope that as people become excited about having the opportunity to be more precisely given either Primary and Secondary test results, and with the consequent new treatment opportunities not previously offered to people with Secondary TMAU, it may inspire other labs to begin to appreciate the benefits this diagnosis offers, and to consider following suite in our efforts to create a Universal Standard.

Many other diseases have different classifications of the same disease, such as diabetes type 1 and type 2, for example, each showing elevated sugar levels in the blood, but each having a different cause, prognosis, and treatment. The same is true for Primary and Secondary TMAU.

UNDERSTANDING TMAU TEST RESULTS AND
OUR RAISING AWARENESS CAMPAIGN

You can follow MEBO-Eliapharma test progress on the right sidebar of MEBO's blog and in related posts. Much more information about this will be forthcoming, as the test results should be ready by the end of next week. While every effort will be taken to protect the privacy of individuals, as patients take their positive results with an explanation of TMAU, and indicated treatment to their respective physicians. While each patient receives treatment for both Primary and Secondary TMAU, each medical doctor involved will learn about TMAU and other types of body odor conditions. There will be much discussion within our community in blog posts and forums, as well as in the Medical Community around the world, as part of MEBO’S Raising Awareness Campaign.

THANK YOU!

Thanks again to all who participated in MEBO-Eliapharma TMAU Test Program, thus demonstration support and faith in MEBO’s efforts to find a good and reputable research laboratory to perform these test for us. We have painstakingly taken extra measures and efforts to not only ensure that the integrity of the sample has remained as intact as possible in the collection and shipping process. The lab has include the proper amount of hydrochloric acid (HCl) for the sample to prevent bacterial growth in the urine which may otherwise result in a false positive; and the lab shipping an ice bag to maintain the specimen in a frozen state to prevent TMA from escaping as it turns into gas at room temperature, as some theories claim.

Also, the lab has painstakingly calibrated their equipment, so that we can all feel confident that the results are indeed accurate and a true reflection of the condition on urine samples from the moment collected until the bank runs the test. And without no lucrative ends, MEBO has spent countless volunteer hours to negotiate low rates with FedEx to get the samples to the lab as fast as possible from almost anywhere in the world in a frozen state, to ensure that the samples are not in the least bit corrupted by bacterial growth or TMA turning into gas.

If you would like to test in our MEBO International TMAU Testing Program, please fill the test following, MEBO-Eliapharma TMAU Test Requisition/Survey Form.

María

María de la Torre
President and Executive Director

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

---

New FMO3 paper involving Dr John Cashman

Readers will know that Dr John Cashman of HBRI in San Diego has been at the forefront of FMO3/TMAU research for over a decade now, although overall there is little FMO3 research in general. Nowadays there is very little research seeming to be published on the subject other than by Dr Cashman.

For this new paper he has teamed up with a Japanese researcher who also has a history in TMAU/FMO3 research and with whom Dr Cashman has worked before. Reading the Abstract, this study seems to have been to largely find out the degree of FMO3 activity in childhood and involved testing 77 children ? The conclusions seem to be that trimethylamine in children seems to largely carried out by FMO3 and no part is played by FMO1 or FMO5. It needs clarifying, but it seems to suggest that children with just one 'flawed' copy of an FMO3 gene appeared to have variations in FMO3 development, at least in childhood ?

Developmental variations in metabolic capacity of flavin-containing mono-oxygenase 3 in childhood.
Shimizu M, Denton T, Kozono M, Cashman JR, Leeder JS, Yamazaki H.

Showa Pharmaceutical University, Machida, Tokyo 194-8543, Japan Human BioMolecular Research Institute, San Diego, CA 92121 Children's Mercy Hospital, Kansas City, MO 64108, USA.

Abstract
WHAT IS ALREADY KNOWN ABOUT THIS SUBJECT • The function of the human flavin-containing mono-oxygenase (FMO) has been shown to have large inter-individual variation related to trimethylaminuria. WHAT THIS STUDY ADDS • The study suggests that a developmental variation in functional metabolic capacity of FMO3 is occurring in childhood on the basis of in vivo phenotyping tests and in vitro liver microsomal determinations. AIM The aim of this study was to investigate intra- and inter-individual variations of functional metabolic capacity of flavin-containing mono-oxygenase (FMO) during childhood using trimethylamine N-oxygenation as a probe reaction. METHODS Trimethylamine N-oxygenation functional activity and presence of FMO1 (fetal form), FMO3 (adult form), and FMO5 (endogenous form) were immunochemically determined and compared in human liver microsomes obtained from children at various ages. As a control, the same parameters were studied with recombinant FMO1, FMO3 and FMO5 proteins as enzyme sources. Developmental variation in functional metabolic capacity of FMO was estimated by measuring urinary trimethylamine and its N-oxide in several individuals at different ages and in a group of 77 subjects in childhood. RESULTS There was a significant correlation between trimethylamine N-oxygenation functional activity and FMO3 expression levels in human liver microsomes (r= 0.71, P < 0.05, n= 9). Trimethylamine N-oxygenation was catalyzed largely by FMO3 and not by FMO1 or FMO5. On the basis of analysis of intra-individual observations and collective urine samples under daily dietary conditions it was possible that neonates or infants harbouring at least one non-inactive-allele of the FMO3 gene could have developmental FMO3 metabolic capacity in childhood. CONCLUSIONS Developmental variations in functional metabolic capacity of FMO3 in childhood were shown both on the basis of in vivo phenotyping tests and in in vitro liver microsomal determinations. © 2011 The Authors. British Journal of Clinical Pharmacology © 2011 The British Pharmacological Society.

Abstract on Pubmed

Article on FMO3
Article on TMAU

Hotel booking special deadline for Washington DC Meetup

Tomorrow is the last day to book your suite at the MEBO rate of $89/room (not per person) per night at Embassy Suites Dulles Airport for our Washington DC meetup for 08 April 2011 - 11 April 2011. You can reserve a room without obligation using a credit card to guarantee the rate. Funds will not be held by your credit card account nor will charges be made to it until you check out after your hotel stay. You can cancel your reservations up to 24 hours prior without a penalty. For online reservations, please visit the website, http://embassysuites.hilton.com/en/e...c_id=POG#hotel and book your hotel stay directly, or call 1-800-445-8667 and give the MEBO Group/Convention Code:MER

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.

After midnight Friday night, the rooms held for us will go back into the hotel's inventory, and you could still reserve your suite, but with regular rates and more restrictions.

I hope to see many of you there. We have a full agenda consisting of a 4 hour conference on Saturday morning at 11:00a.m., after our buffet breakfast, which ends at 10:30a.m. on Saturday, eating meals together, socializing at the Manager's Reception, and visiting sites at this beautiful city.

Our conference will begin at 11:00a.m. and consist of the following topics:

1. Even though Dr. Cheryl Fields (Dr. Stillstanding) cannot attend the meetup in person, she has offered to do a simple conference call with a speakerphone on the table (not a webinar) during this phase of our meetup, and do a presentation on employment and/or human relations/community resources with us followed by an informal Q&A and discussion session. (approximately 1 hour or less). Additional information about the logistics of the conference call will be forthcoming.


2. Another member will do a presentation on Dr. John Cashman's Interview posted in MEBO's Blog on the FMO3 metabolic enzymes and some its various types of deficiencies, including but not limited to TMAU, resulting in multiple types of odor resulting from different types of substrates. (approximately one hour or less)


3. I will close the session with information on Raising Awareness Campaign, including but not limited to community members printing and placing flyers in strategic locations, and to discuss MEBO's International Testing Programs, including but not limited to TMAU, MEBO's International Program, with new testing and research opportunities MEBO is pursuing worldwide, and Glenna's Public Relations activities working closely with other body odor organizations and establishing relations with our US Senators to promote the NORD Fund, other research efforts and general raising awareness efforts. (approximately 1 hour or less)

We expect to be able to find a media that we can use that allows anyone from around the world to call in to this conference call to be a part of it. Everyone would be welcome to join us on the call, though no one would be required to speak during the call unless one chooses to do so.

María

María de la Torre
President and Executive Director

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

---

MeBO Research - Eliapharma TMAU testing to test first batch on Monday

Update 10

MeBO Research is happy to announce that the first batch of samples will be prepared for testing for trimethylaminuria this coming Monday, March 21st. Since this is the first batch of samples, precautionary measures will mean the results will not be sent out for a week afterwards, as experts will be consulted to do quality control on the data. Results will be sent by email in PDF format.

Background : MeBO Research has sought to bring to the public the ability to test for trimethylaminuria directly, without a medical referral, as economically as possible, without loss of testing standards. Last year we found a research lab who would test the samples we supplied, Eliapharma Services Inc. near Montreal. The process started around last November and the logistics have been daunting, including finding a suitable test-kit, negotiating rates with FedEx, and working through Customs' many rules.

For example, Initially, Canadian Customs was very cautious with our international shipment of biological goods (urine) entering their country, as was the United States, delaying clearance for a day or two. Thankfully, the Broker MEBO employs expedited the special inspections as quickly as possible, and no samples were damaged. Within a couple of weeks, we seem to have won their trust, and kits have been clearing much faster. Just today, three kits cleared Customs within an hour or two and were quickly on their way to the lab, literally arriving the next day from the point of origin as promised. All the samples are stored frozen at the lab until testing.

MEBO and Eliapharma insist on perfection and professionalism, and nothing else will do. We do appreciate your cooperation and patience as we establish this program for you. At last we are at the testing stage, and have learnt much from the process and will refine the process in the future. Thank you for your support and patience.

If you would like to test in our
MEBO International TMAU Testing Program,
please fill out the following,

MEBO-Eliapharma TMAU Test Requisition/Survey Form

MEBO’s diverse Programs formed by volunteers

Even though MeBO’s Board Members and other volunteers have never received compensation for their long hours of volunteer work for over 3 years, everyone who has participated in the coordinated efforts of the various international MeBO Programs, sufferers and non-sufferer supporters alike, have nonetheless made a huge impact in paving the way toward raising awareness and promoting testing and research for body odor sufferers. The strong dedication and conviction of people in our international community has allowed for many programs to be created and to grow in leaps and bounds in a relatively short period of time.

The following are projects built on long hours of MeBO volunteer work provide by sufferers, experts, and non-sufferers community volunteers from the legal and business fields, as well as a new project involving MEBO’s new efforts to establish relations with the political community in the US:

SCOUTING EFFORTS:

Initially MeBO’s strategy began by contacting experts to establish relations with them, who in turn have supported our cause by participating in interviews, pro-bono consultations with MeBO as they very kindly explained various body odor condition concepts to us, and general guidance for our community.

MEBO’s INTERNATIONAL TEST PROGRAM:

MeBO needs to find a volunteer accountant in the United States who would offer pro bono services to file a 990N Postcard by May 15, 2011.

In addition to compiling information about TMAU testing labs around the world and posting it in MeBO’s blog and website, as well as promoting all existing testing opportunities, MeBO has established international testing opportunities, such as the MEBO-Biolab Gut Dysbiosis Study and TMAU testing, and continues to pursue international testing opportunities for other types of body odor condition as well by negotiating group rates with various labs in multiple countries. In an effort to allow these tests to be accessible to all sufferers around the world, MeBO has committed to overcome many significant obstacles encountered in the complex process of international shipping of very small amounts of chemicals and biological goods (urine and blood samples, etc.) we use for diagnostic purposes.

RAISING AWARENESS CAMPAIGN:

1. RAISING AWARENESS IN THE MENTAL HEALTH COMMUNITY: As MeBO has attempted to define the therapeutic needs of sufferers, MeBO launched a very proactive attack on efforts made by the American Psychiatric Association to classify Olfactory Reference Syndrome (ORS) as a delusional condition. This campaign was very successful in that instead, it was classified in the Appendix for Further Research, and leading experts in the Mental Health field in the Eastern and Western parts of the US, shift their treatment approach for, “an Obsessive Compulsive Spectrum Disorder with a strong anxiety component. As such, it belongs in the new Anxiety and Obsessive-Compulsive Spectrum Disorders category.” Additional effort is needed to now spread this new classification and therapeutic perspective to all mental health experts around the world.
2. EXPERTS COMMUNICATING WITH EXPERTS ON OUR BEHALF: MeBO works very closely with experts to provide sufferers literature on TMAU to give to their medical doctors
3. FLYERS: Printing and passing out flyers on body odor conditions by volunteers directing readers to our multiple international community forums, blogs, and MEBO’s website for information and support in multiple languages

PUBLIC RELATIONS PROGRAMS COORDINATED BY MEBO's DIRECTOR OF PUBLIC RELATIONS, GLENNA GONZALEZ, MBA

1. PURSUING POLITICAL SUPPORT:
   MeBO needs to raise £2,000 to raise MEBO’s Not For Profit Limited by Guarantee status to a Charity status in England and Wales to have the same opportunities as its US Charity status enjoys.
   Glenna is embarking on a proactive effort to establish relations with US senators, congresspersons, political journalists, etc., in an effort to raise awareness of the existence of body odor conditions, the devastation it brings to the lives of sufferers, including resulting in serious mental health conditions, and in some cases, significantly aggravate certain pre-existing medical conditions, such as epilepsy, learning disabilities, anxiety, and possibly others, as noted in some scientific studies. The primary purpose of establishing relations with our representatives is to obtain political and financial support through grants for research into all types of body odor conditions.
2. Glenna’s great personality and education is one of MeBO’s strongest assets in our efforts to work closely with multiple body odor organizations in an attempt to reach other public institutions through public speaking events and the press.
3. Glenna has coordinated and organized MeBO’s Annual Meetup in Washington DC this year, with the help of other volunteers.
4. Glenna has many plans of important projects to raise social awareness, and the more volunteers that come forward to help her, the greater our chances of achieving these ventures.

MeBO’s TECHNICAL CONSULTANT AND OTHER VOLUNTEERS:

Countless hours of technical assistance have been donated by MeBO’s Tech along with other volunteers, which allow the logistics of all the programs mentioned above to come to fruition. With the advancements of modern technology, communications boundaries that previous existed are now nonexistent and people from around the world can work on the same projects together, each in their respective countries, thanks to the volunteer services of our technical consultant.

THE NORD FUND:

In this past year, MeBO has placed greater focus on fundraising for the NORD fund than for any other MeBO activity, with much success, since we already had the funds necessary to register MeBO as a Charity in the United States.

CHARITY STATUS in the US with pro bono services from FIU:

MEBO Research, Inc., was awarded a Public Charity 501(C)3 status in the United States effective April 21, 2010 with the pro bono services of the Legal Clinic of the College of Law of Florida International University. This status elevates MeBO to a more reputable status which Glenna can now exploit as she attempts to persuade our legislative representatives for assistance. Thanks to all the pro bono and volunteer service, MeBO has not needed much money to achieve Charity status in the US and to accomplish many of the above-mentioned projects. Although most companies go in the red the first year or two of their inception, MeBO has steadfastly stayed in the black at all times, as our expenses have been kept at a minimum level.

PRO BONO ACCOUNTING SERVICES IN ENGLAND:

MeBO has enjoyed the pro bono services of a volunteer non-sufferer in England whose compassion and expertise is greatly appreciated.

MeBO’s FUTURE GOALS AND NEEDS

MEBO Research faces two challenges ahead,

1. To find a volunteer accountant in the United States who would offer pro bono services to file a 990N Postcard by May 15, 2011.


2. To raise £2,000 to raise MEBO’s Not For Profit Limited by Guarantee status to a Charity status in England and Wales. MEBO Research was registered in England and Wales on February 5, 2009.

María de la Torre
President and Executive Director

---

---

Recent developments in the Washington DC Meetup

Much to our dismay, in order to get the tickets for a tour of the White House, MEBO Research would need to fill out one spreadsheet given to us by a Congressional Aid answering personal questions about each visitor attending the tour. It wouldn't be so bad if it was just the name, address, and phone number, but it gets very involved, including each person's Social Security Number required by the Secret Police that guards the White House and the president and his family. Even that might be understandable if they would ask each individual to submit this information personally via fax maybe; but instead, they want everyone to give their Social Security number to one of MEBO's representative for this person to create a list of each person in the group's Social Security number along with other information, so that the MEBO representative would then email the spreadsheet with all this information to the Congressional Aid.

Well, I am truly sorry, but I think that is treading on very dangerous grounds for everyone involved. I would prefer not to receive anyone's Social Security information, or to send it to someone via email. That is an invitation for hackers to have a field day with us. So unfortunately, the White House part of our Washington experience as a group will be cancelled. Therefore, I think it would be a good idea to perhaps meet at the hotel for our conference after breakfast, around 10:30a.m., and after lunch, we can decide where we want to go visit in the city. There are so many places to chose from near the hotel for lunch and then places to visit, and perhaps the weather may be a determining factor as to where we should begin.

Afterwards, at 5:30pm, we can return to the hotel for the Manager's Reception until 7:30pm to then go to dinner, and we'll ad-lib it from then on through the evening.

Sunday would be more of a social day, and after breakfast, we can meet again for follow-up discussion on the presentations and to have the opportunity for open discussion about what we've learned from each other regarding the different types of body odor conditions and what it's like to meet other sufferers, etc. Once that is concluded, we can spend time together for lunch and visit sights as the day takes us. Some may be leaving us on Sunday, and others are staying the night to return home on Monday or later.

The aim of the meetup is three-fold - to learn about some of the latest developments and management options of the various types of body odor, to establish close relationships with people with whom we share similar experiences, and to share these special experiences together amongst the beauty that surrounds us in the city and even in the hotel. The most meaningful aspect of a meetup like this is that it combines intellectual experience with an emotional and social experiences as a very special bond instantly forms and develops as we share time together. This healing process always happens when we meet with people whom we know have had very similar experiences day in and day out living with this condition. We already know what each other have been through without even having to mention it. And to add another very special element to this bonding experience is to be amongst the beauty of our surroundings in the spacious and inviting hotel lobby and in the city we visit.

I wish everyone in this community from around the world could make it. I know we will be having some new visitors from oversees this year, and I wish more would come as well. If you are planning on coming from a distant country, please let me know to see how I can help with your journey.

See you all soon!

María


María de la Torre
President and Executive Director

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

---

---

The body odor and halitosis community goes to Washington : 8-10 April

With Spring in the air and Cherry tree blossoms throughout the National Mall in full bloom, thoughts turn to the 2nd annual USA body odor and halitosis meetup being held at Embassy Suites Dulles Airport, Washington starting on Friday night 8 April through to Sunday 10 April.

The first such USA meeting, arranged by MeBO Research President, Maria de la Torre, was held last year at Nashville Airport Embassy Suites, attracting 16 guests and deemed a huge success.

For those wishing to book a room, MeBO has arranged a deal with Embassy Suites that allows a discount rate for those who book using this webpage before March 18, to book for a day or 3. People are also welcome to just turn up for a while at the time, without booking. The consensus from last year is that those who only booked for a day wished they had stayed for both days.

View Larger Map

This year at Washington, the interest has been phenomenal, with our poll suggesting 14 are already prepared to go, and another 39 are interested. 6 rooms have already been booked, and some are staying with family and friends in the city. This year the plan is to visit the National Mall area, with free tickets to a private White House Tour available. Please let us know if you are interested in going on the White House tour, since we are ordering the free tickets tomorrow. More details to follow about this.

Back at the hotel, everyone will feel relaxed in the open plan meeting area, and enjoy the company of others with the same condition. There will also likely be discussions about all aspects of body odor and halitosis including research. No photos or video of others is the general etiquette, with none allowed without the person's permission.

Anyone wishing to reserve a suite can do so through the MeBO page on the Embassy Suites site before March 18 (that's about 2 weeks from now). Or you can book later if you wish. The non-MeBO rates will charge an additional fee for more than one person, and the low rates non-MeBO rates would be instant purchase with penalties for cancellations. On the other hand, MeBO's rates do not charge per person, but rather per suite, and will not hold funds on your credit card account, and you can cancel up to 24 hours prior without a fee.

Come along and meet your brothers and sisters.

---

Posts about the 2010 Nashville body odor/halitosis meetup

photos from Nashville 2010


MEBO RESEARCH STAFF

---

---

Brief history of the Yoshino cherry trees in Washington:
After the wife of the Japanese Ambassador planted two Yoshino Cherry Tees in 1912 on the northern bank of the Tidal Basin, about 125 feet south of what is now Independence Avenue, many additional gifts were made throughout the years by other Japanese Amabassadors to the US; and in 1965,

The Japanese Government made another generous gift of 3,800 Yoshino trees to another first lady devoted to the beautification of Washington, Lady Bird Johnson, wife of President Lyndon Baines Johnson. American-grown this time, many of these are planted on the grounds of the Washington Monument. Lady Bird Johnson and Mrs. Ryuji Takeuchi, wife of Japan's Ambassador, reenacted the planting ceremony of 1912.