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body odor/halitosis : what is your state of occupation ?

Upcoming get-togethers

Feb 5th 2pm : Arun's Northampton meetup
March 23-24 : Shreveport Louisiana
Cheryl Fields : Montgomery Alabama

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MEBO Community Outreach Director.
Book uplifting seminars for free.

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email: cheryl.fields@meboresearch.org

EXPERT INTERVIEWS AND PRESENTATIONS

Interview with Nigel Manning

Interview with Dr. Robin Lachmann

tmau.org.uk interview with Dr Robin Lachmann

Interview with Dr. John Cashman

Interview with Cass Nelson-Dooley of Metametrix

Slide Presentation by Dr. Irene Gabashvili

Slideshow Presentation by Professor Elizabeth Shephard TMAU/FMO3 Slideshow Presentation"

About MEBO's Founder and Executive Director

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TMAU urine test : what was your result indicative of ?

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Blog Archive

NORD TMAU GRANT (one award),
funded by patient group, Trimethylaminuria Foundation,
was awarded to recipient announcement:
Danielle R. Reed, PhD/ George Preti, PhD
Monell Chemical Senses Center
University City Science Center
Philadelphia, PA
“Revisiting TMAU Through Exome Sequencing”
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Saturday, January 29, 2011

MEBO RESEARCH IS NOW A REGISTERED USA PUBLIC CHARITY




It is with great satisfaction that I announce to have received a letter dated January 19, 2011, from the United States Department of Treasury, Internal Revenue Service informing me that,





… MEBO Research has been determined to be exempt for Federal income tax under section 501(c)(3) of the Internal Revenue Code. [Effective Date of Exemption: April 21, 2010] Contributions to you are deductible under section 170 of the Code. You are also qualified to receive tax deductible bequests, devises, transfers or gifts under section 2055, 2106 or 2522 of the Code…

Organizations exempt under section 501(c)(3) of the Code are further classified as either public charities or private foundations. We determine that you are a public charity under the Code section (s) listed in the heading of this letter. [Public Charity Status: 170(b)(1)(A)(vi)].

On behalf of MEBO's Board of Directors and all its members from around the world, I would like to express our most sincere appreciation to the Legal Clinic of the College of Law of Florida International University for the invaluable pro-bono contribution it has given MEBO, first in its registration as a “Not for Profit” Corporation at the Florida Department of State, Division of Corporations on April 21, 2010, followed by their extensive process of preparing IRS Form 1023 to apply for Public Charity Status with the Department of US Treasury. Without this FIU community outreach program, this accomplishment may not have come to fruition anytime soon.


WHAT CAN CHARITY STATUS OFFER
OUR INTERNATIONAL COMMUNITY?

The underlying benefit of MEBO Research being classified as a Public Charity by the US Department of Treasury is the recognition of the integrity of the company, its Board of Directors, its past activities, and future commitments in accordance with MEBO’s Articles of Association and Bylaws. This prestigious status instills confidence in private and public foundations so as to encourage awarding research funding to MEBO and other entities who have united with MEBO to strive to achieve our objectives. It is MEBO’s unwavering commitment to uphold this distinguished honor by humbly, benevolently, and with determination carry out its very important mission – to promote research into all types of body odor conditions in order to find the appropriate treatment and cure, and most significantly, to persevere in extending the fruits of this benefits to all sufferers no matter what part of the world they live in. This is a tall order indeed, and so far, it has taken MEBO three years simply to achieve Public Charity status, so even though we know we that we've only just begun and still have a very long road ahead, we will continue moving forward until all is achieved.

More detailed explanation of MEBO’s activities in this respect will be forthcoming as projects and programs currently being developed are initiated, so that anyone interested in participating may do so. I look forward to working with experts, labs, and other non-profit organizations with whom we have already established a close working relations, as well as with each and every sufferer anywhere in the world who turns to MEBO for support, testing, research, and guidance.

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition


Thursday, January 27, 2011

Clinical Trimethylaminuria test lab in South Africa

South Africa TMAU test
It appears that a clinical test lab in South Africa exists that offers the trimethylaminuria urine test. We sent an email but so far got no reply. It seems likely that to test there will require a Doctor's referral. If anyone has any more information, we would be happy to learn of it.

The lab is :

Laboratory for Inborn Errors of Metabolism
the School for Biochemistry
North-West University
Potchefstroom

The link for the PDF giving information on their TMAU test can be found on this page :
South Africa lab testing for Trimethylaminuria (TMAU)
South Africa TMAU test : PDF instructions

Tuesday, January 25, 2011

New FMO research paper from Phillips & Shephard

Flavin-containing monooxygenases (FMOs) metabolize a number of therapeutic drugs. However, their role in drug metabolism has been overlooked compared with that of the cytochromes P450 (CYPs). Genetic variants of FMOs are expected to influence drug response and/or contribute to adverse drug reactions
Of the few researchers into the Flavin containing mono-oxygenase family of enzymes, 2 of the most prominent over the years have been Professors Elizabeth Shephard of University College, and Ian Phillips of Queen Mary University, both in London.

Today they release a new paper on the FMO family of enzymes, this time using knockout mice to remove the FMO family from the mice and see how they react to drugs known to use FMO enzymes to metabolize the drugs.

Only the abstract is available for free, so little can be drawn from the abstract itself. Some may recall that one of Dr Christodolou's proposals for a TMAU research project was in part to develop FMO knockout mice. Unfortunately that research never proceeded due to lack of funding

Any research about the FMO family of enzymes is likely to be of interest to someone with genetic TMAU, since TMAU is at this point regarded as strictly being due to deficiency in FMO3, but perhaps other FMO's may be found to play a role in the future. Currently there are 6 forms of FMO known (FMO 1-6).

The potential of knockout mouse lines in defining the role of flavin-containing monooxygenases in drug metabolism.
Shephard EA, Phillips IR.

University College London, Institute of Structural and Molecular Biology, Gower Street, London WC1E 6BT, UK. e.shephard@ucl.ac.uk

Abstract
IMPORTANCE OF THE FIELD: Flavin-containing monooxygenases (FMOs) metabolize a number of therapeutic drugs. However, their role in drug metabolism has been overlooked compared with that of the cytochromes P450 (CYPs). Genetic variants of FMOs are expected to influence drug response and/or contribute to adverse drug reactions. AREAS COVERED IN THE REVIEW: We review tissue-specific expression of FMOs and genetic variation that may influence drug metabolism. We discuss how the use of mouse lines in which Fmo genes have been deleted can demonstrate the role an FMO plays in the metabolism of a drug, particularly if the drug is subject to metabolism by other enzymes, for example, CYPs, or undergoes retro-reduction. We cite seminal papers and review articles to give the reader an appreciation of the FMO field.

WHAT THE READER WILL GAIN: Insights into the problems associated with determining the contribution of an FMO to the metabolism of a drug and how an Fmo-knockout mouse line has revealed the role of FMO1 in the metabolism of imipramine in vivo.

TAKE HOME MESSAGE: The use of an Fmo-knockout mouse line demonstrates a more important role for FMOs in multi-pathway drug metabolism than has previously been appreciated.

Sunday, January 23, 2011

TMAU awareness pioneer Cheryl appears in the NY Times

Few have done as much as Cheryl Marshall to raise awareness about trimethylaminuria (TMAU), as well as being a main organizer of fundraising for the NORD TMAU Fund through her voluntary work with the website rrr-tmau.org.

As well as appearing on Medical Mysteries a while ago, Cheryl now raises awareness by appearing in an article about TMAU in the New York Times.
Cheryl's story is the 6th of 6 stories about 'rare' diseases, and includes a 2 minute audio.

Thank you Cheryl for all the pioneering work you do, and people can note that the NORD TMAU Fund needs only about $2000 for it to start asking experts for TMAU research proposals.

Thursday, January 20, 2011

What is involved in creating an International Test Program



Update 7

In keeping with MEBO Research’s focus of uniting sufferers from all corners of the globe with experts so that no one will ever have to feel the humiliation and isolation of living with uncontrollable body odor, a great deal of work has gone into paving the way and building a foundation to create an International Test Program. It is no wonder that an international test program such as this has never been done before because it is most certainly not financially profitable, and only committed volunteer hours, weeks, months, and years of hard work can make it come to fruition. MEBO Research is a non-profit organization that has no income other than donations received from time to time. All the work that has been accomplished so far has come from the hearts and dedication of its volunteers. MEBO’s efforts and commitment will not cease until any and all sufferers anywhere in the world have within their grasp the means to understand the cause of the problem through proper testing, and to receive the proper medical treatment necessary to manage it.

It is no wonder that an international test program such as this has never been done before because it is most certainly not financially profitable, and only committed volunteer hours, weeks, months, and years of hard work can make it come to fruition.
Three and a half months ago, MEBO and Eliapharma Services Inc., decided to create an International Test Program that would conceivably lead in the long term toward obtaining research grants in hopes to learn more about the causes of the various body odor conditions and to find treatment and a cure. We were fully cognizant of the fact that it would take a great deal of time, a significant financial investment, mostly initially made by the lab Eliapharma, and a great deal of volunteer work to develop such a program. Contrary to MEBO, Eliapharma is a for profit business. However, while they are looking more toward long-term goals, they are keeping in mind that we don’t have much money, and that we need to keep the price of testing as low as possible. With this in mind, MEBO and Eliapharma decided to begin our International Test Program initially with TMAU Urine Testing, and hopefully progressing to other tests and research projects.

While the lab was performing all the preparations and calibrations necessary to accurately run the test, MEBO Research began the long and arduous process of setting up the shipping service with negotiated FedEx shipping rates and complying with international documentation requirements. Little did we know just how extremely complex and involved this process would be. I must say that FedEx has been extremely instrumental in guiding and training me in this endeavor, as they have not only worked on a discounted shipping rates plan for us, in spite of the across the board rates increase in 2011 of most major shipping carriers, but they have also provided me with many hours of training on the very complex international shipping requirements, since our aims involve almost every country in the world, and each has its own import/export laws, taxes and duties, homeland security programs, etc.

So far, I have spent countless hours, weeks, and months preparing documents required by the North American Free Trade Agreement (NAFTA, involving Canada, US, and Mexico), Dangerous Goods declarations forms (since the kit carries Hydrochloric acid), declarations forms on contagious/non-contagious biological samples (since the kit returning to Canada will contain urine), Certificate of Origin from the each manufacturer of each item included in the kit (such as gloves, vials, HCl, shipping boxes, ice pack, ziplock bags, etc), Power of Attorney forms allowing FedEx to serve as Brokers for MEBO and Eliapharma when needed, Agreement to Maintain Books and Records outside of Canada form, and other forms as well. These are the only the forms needed for NAFTA, which also meets the requirements of many other countries, but as we progress to other countries, there will be additional forms required. Each form needs to be filled out according to strict specifications, and FedEx has been very instrumental in showing me how to do each one.


Once this foundation is firmly established, we will be able to grow in leaps and bounds, and expand beyond those boundaries that have always prevented our international community from uniting and from letting our presence and our needs be felt in the scientific, medical, and political arena.
As a result of such complicated and involved procedures, we have currently only begun shipping kits domestically, within Canada from where the lab sends out the kits. Now that almost all the documents seem to be up to standards, we will soon begin shipping to the United States and Mexico, and very shortly thereafter to persons on the waitlist from Guatemala, Colombia, Argentina, Peru, Ecuador, Venezuela, Poland, Spain, Finland, Portugal, Macedonia, and Australia, to name a few. So far, it has taken us over three months to establish a strong foundation upon which to build this program. I have been very cautious and meticulous each step of the way because it is imperative that the forms are filled out exactly as required to avoid fines, or in the worst case scenario, to prevent Customs from destroying the samples, resulting in the sufferer having to repeat the test involving another choline load and sample collection, freezing and shipping process. I have committed to do everything in my power to ensure that this will not happen. I continue to proactively look for any possible form and documents I may need to fill out to ensure that the requirements of Customs Agencies of all the countries we will ship to will be fully satisfied.

I do apologize if this initial process of our new International Test Program seems to be slow moving, but I believe doing this process carefully and correctly would represent building a solid foundation for us to flourish upon. Once this foundation is firmly established, we will be able to grow in leaps and bounds, and expand beyond those boundaries that have always prevented our international community from uniting and from letting our presence and our needs be felt in the scientific, medical, and political arena. I firmly believe that this is the way to accomplish this goal successfully, building a strong foundation, one document at a time, one country at a time, one test at a time. We are heading in the right direction thanks to everyone who has signed up to be a part of this process. Participation and support in this program is greatly appreciated for the greater good.

María


María de la Torre
President and Executive Director

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


Wednesday, January 19, 2011

What to do with a positive TMAU test result

If anyone receives a positive test result for Primary or Secondary TMAU, it is recommended that the documents noted below be printed and taken to one’s physician along with the test results. Please click on the labels below to display these documents. In addition, one may print from any of the following websites linked to below to also share with the physicians.

In an effort to explain to one’s medical doctor about the TMAU testing process and about TMAU in general, Nigel Manning, Principal Clinical Scientist, Dept. Clinical Chemistry Sheffield Children’s Hospital, UK, has written a letter to the doctors and a brief Introduction to Trimethylaminuria. In addition, of interest is an interview with Dr. Robin Lachmann, PhD, MRCP, Consultant in Metabolic Medicine, the only medical doctor to whom all patients with a positive test result are referred to in London.

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María de la Torre
President and Executive Director

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


Monday, January 17, 2011

Do they smell me or not?


One of the main conflicts caused by having an unusual and difficult to control odor is that not everyone can detect it. It appears that all persons that have been diagnosed with trimethylaminuria (TMAU) have gone through the unfortunate experience of a family member or health professional having told them that “it’s all in your head” or that they are suffering from delusions, etc. But it is most probable that these individuals don’t detect the odor because not everyone has the same olfactory sensitivity.

The chemoreceptors of the olfactory system: The amount of chemoreceptors that an animal possess in its olfactory mucosa is indicative of its olfactory sensitivity. Odor produces tolerance, that is, after perceiving certain odors for a certain period of time, we stop detecting it, since the receptors are impregnated and saturated with that substance, and stop sending the signal to the brain. [Translated from Spanish into English by Maria de la Torre]


But the main turmoil produced by these contradictions, being exposed to those who do smell the odor and those who don’t, that results in the sufferer developing an intense, oppressive, and paralyzing state of anxiety and depression. It is the current mental health opinion that mental health treatment should be focused on reducing this anxiety, obsessive-compulsive behavior, and depression, as opposed to not in trying to convince the patient the he or she does not have discernment abilities to interpret reality. It is important that the professionals and family members understand that not everyone has the same olfactory sensitivity, thus not everyone can detect an odor that others may detect and react towards.

Olfactory sensitivity is similar in children and young adults, but there is a decline starting in the thirties…For this reason, the age for optimum olfactory capacity is around 33-34 years, since it is at this time that the olfactory sensitivity is still sufficiently intact, and the learning process combine to render the maximum olfactory perception (Cainet et. al., 1994)[Translated from Spanish into English by Maria de la Torre]


Many persons affected with body odor manifest an intermittent strong odor and alternate between mild and strong odor, influenced by diet, hormonal changes, stress, metabolic enzymes deficiencies, etc. The odor may very well be triggered from time to time and then suddenly disappear (or at least is not detected as easily), and appears to not be constant. At the same time, the odor itself changes, for example, according to chemistrydaily.com, trimethylamine (TMA) in low concentration emits a rotten fish odor, and at high concentration it is more like ammonia, since TMAU is a strong base. Therefore it is possible that one person’s olfactory system perceives a fish odor and not ammonia due to saturation and tolerance.
The social reactions against sufferers and the inconsistent triggers of odor are the two most potent factors in creating a state of anxiety and chronic and acute social phobia.


  1. Over the past decade we have encountered many patients who have odour problems on a mild, transient, and periodic basis… it “is not merely a rare recessive disorder but rather a spectrum of phenotypes of transient or mild malodour…” 1999 letter in the Lancet, about ‘periodic’ trimethylaminuria by Dr. Stephen C Mitchell.
  2. Only 7% of a group has anosmia to trimethylamine (TMA) 1975 paper, Specific anosmia to trimethylamine: The fishy primary odor
  3. Dr. José Martínez Vidal, Head of Otolaryngologist Services of the Complexo Hospitalario Universitario de A Coruña (CHUAC) (university of Coruña, Santiago de Compostela, Spain), states that throughout his career he has had frequent cases of patients who have lost their sense of smell (develop anosmia) with age, the same as with other senses such as sight or hearing. He also talks about persons who suffer from hyperosmia, a disorder of the nervous system that involves an increased exaggerated sensitivity toward odors.
  4. Trimethylamine (TMA) in low concentration has a fishy odor and ammonia like odor in high concentration. Human Metabolome Database.


Original post in Spanish
María de la Torre
President and Executive Director

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


Sunday, January 16, 2011

New FMO3 paper in pubmed by Italian researchers

Flavin-containing monooxygenase 3 (FMO3) is the gene repsonsible for genetic trimethylaminuria (due to deficiency of), so is of great interest to this blog. New medical research papers about FMO3 are surprisingly rare, given that it metabolizes hundreds of compounds in humans and is regarded as one of the 'drug metabolizing enzymes' and hence deficiency may cause adverse drug reactions.

In this case a new paper is published by a group Italian researchers and is probably only of indirect interest to genetic TMAU cases. It seems that the researchers have come up with a way to test FMO3 reactions in bovine cells in the laboratory. Whether this is a major step or similar methods are already used is not known. It would most likely be used to test if drugs are FMO3 substrates in any way.

Only the abstract is available to view for free.

Electro-catalysis by immobilised human flavin-containing monooxygenase isoform 3 (hFMO3).
Castrignanò S, Sadeghi SJ, Gilardi G.
Department of Human and Animal Biology, University of Torino, via Accademia Albertina, 13, 10123, Torino, Italy.
Abstract
Human flavin-containing monooxygenases are the second most important class of drug-metabolizing enzymes after cytochromes P450. Here we report a simple but functional and stable enzyme-electrode system based on a glassy carbon (GC) electrode with human flavin-containing monooxygenase isoform 3 (hFMO3) entrapped in a gel cross-linked with bovine serum albumin (BSA) by glutaraldehyde. The enzymatic electrochemical responsiveness is characterised by using well-known substrates: trimethylamine (TMA), ammonia (NH(3)), triethylamine (TEA), and benzydamine (BZD). The apparent Michaelis-Menten constant (K'(M)) and apparent maximum current (I'(max)) are calculated by fitting the current signal to the Michaelis-Menten equation for each substrate. The enzyme-electrode has good characteristics: the calculated sensitivity was 40.9 +/- 0.5 mA mol(-1) L cm(-2) for TMA, 43.3 +/- 0.1 mA mol(-1) L cm(-2) for NH(3), 45.2 +/- 2.2 mA mol(-1) L cm(-2) for TEA, and 39.3 +/- 0.6 mA mol(-1) L cm(-2) for BZD. The stability was constant for 3 days and the inter-electrode reproducibility was 12.5%. This is a novel electrochemical tool that can be used to investigate new potential drugs against the catalytic activity of hFMO3.

pubmed FMO3 abstract paper

Sunday, January 9, 2011

1939 Article Sulphur Contents of Foods

After much searching for a list of sulfur content in foods, a member of our community found an article that contains an extensive list, “Clix. THE SULPHUR CONTENTS OF FOODS” by Margery Masters and Robert Alexander McCance, From the Biochemical Department, King’s College Hospital, London, and the Department of Medicine, Cambridge. Although it is a rather old article, published in 1939, its list of foods seems to be quite thorough.

The article itself points out the discrepancies with other similar reports of the times, especially with fresh produce, probably dependent upon the nutrients in the soil and fertilizers used, etc. Nonetheless, this gives us a good starting point of reference until more modern articles/tools can be found.

Friday, January 7, 2011

Exciting changes in Mental Health Field re Olfactory Reference Syndrome

RAISING AWARENESS CAMPAIGN

I am very happy to say that I have received, and by extension our whole community has received, an email copy today of the OCD Center of Los Angeles Newsletter from the Clinical Director, Tom Corboy, MFT, with great news for the body odor community. Tom has created a web version of this email for better access to it by everyone. The part of this Newsletter that is of interest to the body odor community is the bottom of the page, "Proposed DSM-5 Changes for OCD and Anxiety Disorders." Tom is informing us not only of, “some very exciting changes at the OCD Center of Los Angeles” but also in the American Psychiatric Association regarding the classification and listing of Olfactory Reference Syndrome (ORS).

As some of us might remember, there was a movement of a group of mental health professionals this past summer of 2010 to include ORS in the in the American Psychiatrist Manual of Mental Disorders as a delusional condition, thus implying a state of psychosis. See the posts in this blog, “Olfactory Reference Syndrome published in PubMed.”


Well, I’m delighted to say that today’s email from Tom informs us, “…that the American Psychiatric Association [APA] is planning to list ORS in the Appendix for Further Research” as opposed to the more serious classification originally sought by some in the mental health field. Moreover, ORS has now clearly been redefined by this LA Center and other Mental Health facilities in the United States, as being “an Obsessive Compulsive Spectrum Disorder with a strong anxiety component. As such, it belongs in the new Anxiety and Obsessive-Compulsive Spectrum Disorders category.”

This is great news for our International Body Odor Community! As a result of this change in categorization, we will no longer be accused of being psychotic, or schizophrenic or delusional because of our life-altering social anxiety produced by having a body odor condition. This negative former categorization was potentially very detrimental for the sufferer in any future litigation case or even employment possibilities.
In the new category, ORS falls on the neurotic vs. psychotic realm, and treatment will be more geared toward helping the sufferer cope with anxiety and panic attacks, and to help reduce reclusive behavior, as opposed to trying to convince the patient that they are being delusional.


THIS IS WHAT WE NEED!
THIS IS WHAT WE FOUGHT FOR
WITH OUR RAISING AWARENESS CAMPAIGN!

Our Raising Awareness Campaign approach was launched with the help of the survey provided to us by Dr. Jennifer L. Greenberg, PSY.D., of the Massachusetts General Hospital and Harvard Medical School. Dr. Greenberg invited all the members of our community to participate in a survey to hear 'our side of the story,' and many of us filled out this survey. In addition, the online emails and comments we wrote in response to online articles written by various News networks also clearly explained the lack of scientific basis the psychosis ORS diagnosis had, which was based on the varying olfactory capacity of family, friends, and therapist. A post in this blog, entitled, “Raising Social Awareness in the Mental Health Field” depicts an email conversation I had with a representative of the OCD Center in Los Angeles. We emphasized how detrimental it was to try to convince a sufferer that their reality wasn't real simply because these individuals couldn't smell it.

We wrote over and over again how not everyone has the same olfactory capacity to detect scents, and scientific tests need to be developed to establish the presence or absence of odorous compounds in a sufferer perhaps detected only by a certain percentage of society before ever considering that the condition is delusional. As a result of all this effort, the outcome was APA classifying and listing ORS in the "Appendix for Further Research” listing.

Our community also discussed this at length amongst ourselves in the Mental Health Board of the Body Odor Support Forum, which helped us organize our efforts to raise awareness. Many in our community believe that we could benefit from mental health therapy to help us control anxiety, and the obsession we develop of fearing offending others and their potential nasty remarks, fears of loosing our jobs, and to help us come out of social reclusion that many of us find ourselves in.

The reader may refer to this blog’s post, “Reply from Dr. Jennifer L. Greenberg, PSY.D., RE Survey”, 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.
As a direct result of our survey participation and Raising Awareness email campaign, Dr. Greenberg consequently shifted her opinion on the treatment approach and classification of our condition, as she was quoted on an ABC News article on ORS,

A delusional disorder is someone who has absolute conviction, they're 100 percent convinced that they are emitting an offensive body odor," said Jennifer Greenberg, a clinical research fellow at the OCD and related disorders program at Massachusetts General Hospital and Harvard Medical School.

While many delusional patients are treated with antipsychotics, Greenberg said, "What we are starting to think more about is that the disorder presents like disorders that are closer to obsessive compulsive disorder."


Our campaign was very successful in achieving this final change in classification, THANKS TO EVERYONE WHO PARTICIPATED! If we had not taken action, it could have potentially been "written down in stone" that sufferers are delusional, and that's a scarry thought!

The Raising Awareness Campaign is a very valuable and powerful tool, and if each sufferer found his or her comfortable way to participate in it, all body odor sufferers would become very effective in being better understood by the medical community and hopefully we will achieve the research we so desperately need.

THANKS TO ALL WHO PARTICIPATED IN THE SURVEY AND EMAIL CAMPAIGN!


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

Tuesday, January 4, 2011

Table of the TMAU testing protocols and reference ranges of the known testing labs worldwide

The body odor and halitosis community has a great interest in Trimethylaminuria, given that it is the only generally accepted systemic body odor by the orthodox medical system. Regular readers will be aware there are very few labs who test for TMAU, and that those labs generally have their own protocol which varies from the others.


International TMAU test lab procedures
protocols and reference ranges
The urine test at the labs can vary in instructions, in the equipment used for testing, and in interpretation of the results. Below is a table of the known information about each TMAU urine test lab. If you know that any information is incorrect we would be happy to be informed.

One benefit of knowing the various differences is that since the results are usually the same for each lab, you can compare your results against their reference ranges.

MEBO Research is attempting to construct and update a table of the various procedures that labs use for TMAU testing. The latest version can be seen in this PDF table. If there are any errors, or anyone has new information on TMAU test labs, feel free to let us know.

Saturday, January 1, 2011

Where we've been and where we're going


What has MEBO's volunteer staff

been up to in 2010?


The strong outpour of support these past few years by so many sufferers and experts in our international community has been most inspiring. Even though no one in MEBO’s staff or other volunteers have ever received compensation of any kind (monetary or otherwise) from MEBO for the countless hours invested, much has been accomplished. We are indeed a community united by a common goal – to find a cure for all types of unusual and uncontrollable body odor throughout the world, and we’ve only just begun.

As the year 2010 comes to an end,
we can reminisce on "days gone by."
A special thanks go to,

  1. Our expert overseeing MEBO’s activities, Dr. Irene Gabashvili,

  2. Our Technical Consultant for writing the automated MEBO’S TMAU Test Program Requisition Form, setting up a platform for future surveys and reports, and who took the initiative to design and provide Raising Awareness Flyers for all sufferers from around the world to print and distribute in doctors’ offices, school and work bulletin boards, libraries, etc. , as recommended by other pro-active sufferers. He has also offered to do additional projects for our community next year, including a MEBO Store in our new Charity website,

  3. MEBO’s Director of Public Relations, Glenna Gonzalez who has made the arrangements for our upcoming Washington DC Meetup in April 2011 and is currently writing a Raising Awareness paper to be submitted to journals for publication, which Glenna will share with us in a presentation at the Washington DC Meetup. Along with a few other members of our community, Glenna is a strong supporter and participant of our bi-weekly conference call in the US,

  4. The three Spanish translator volunteers who have helped translate many posts from this English blog to our Spanish Blog and MEBO’s website, including a letter to doctors and Information on TMAU written by the Principal Clinical Scientist who performs most TMAU tests in the UK, Nigel Manning, have been very instrumental in uniting the Spanish community throughout the world. These volunteers are also working at raising awareness in the medical community and promote TMAU testing and research in their respective countries (Spain and Venezuela),

  5. MEBO’s Accountant in England, who has offered her pro-bono services for the year 2009 and future years to come,

  6. The College of Law at Florida International University, whose Legal Clinic offered pro-bono services to register MEBO as a non-profit organization in the United States, and produced all the required documentation for IRS Form 1023, to apply for 501(c)3 Charity, which was submitted on December 16, 2010.

  7. The experts in the US and the UK, including but not limited Nigel Manning, Dr. John Cashman, a leading expert in flavin mono-oxygenase enzyme genetics at the Human Biomolecular Research Institute (HBRI) in San Diego, California, in addition to other experts who prefer to remain anonymous, have written much appreciated professional letters, papers, and interviews for our blog; recognition is also given to a lab that made a donation of TMA-rich samples to support our TMAU Service Dog Program.

  8. Liz Norris, Founder of Pawsibilities Unleashed, Pet Therapy of Kentucky, Inc., a 501(c)3 non-profit organization, who donated a TMAU Service Dog, Dray, and trained his volunteer trainer and caregiver, Charley.

  9. All the volunteers who have participated in MEBO’s Raising Awareness Campaign by telling their stories in home-made videos or writing their stories.

  10. All sufferers from around the world who participated in special TV programs or other recorded programs to promote raising social and medical awareness of body odor conditions, and who organized meetups around the world, including the Thames Festival Meetup.


Below is a list of some of the activities MEBO Research has been involved in during the year 2010, and our goals for the year 2011:

Year 2010’s ongoing efforts
to unite experts and sufferers
to promote research:

  1. Set up and initiated MEBO’s International Test Program with Eliapharma Services, Inc, (a for profit) research lab in Canada that has offered us low rates for TMAU urine testing. We have already begun testing using domestic shipping within Canada, but are still working with FedEx for a Country-to-Country rate system that best fits our needs, as well as to ensure that the various Customs’ documentation requirements of most countries are met.

  2. MEBO's first annual Meetup held at Nashville, with a written presentation paper from Nigel Manning, “TMAU – diagnostic testing at Sheffield Children’s Hospital” specifically for this meetup.

  3. TMAU Service Dog Program with Pawsibilities Unleashed.

  4. MEBO Research, Inc. was incorporated in the State of Florida on April 21, 2010 as a Not for Profit Organization.

  5. On December 16, 2010, IRS received the 501(c)3 application Form 1023 for MEBO Research to obtain Charity status.

  6. Interview with Dr. John Cashman of HBRI in San Diego

  7. Nigel’s letter to medical doctors explaining TMAU testing and paper on TMAU to raise awareness in the medical community. (English) (translated into Spanish).

  8. Sufferer strong participation in MEBO’s Raising awareness Campaign with Raising Awareness Flyers, writing articles for journals, and publishing videos in our English and Spanish blogs made by sufferers from many parts of the world.

  9. Promote the NORD Fund to obtain research funds from the US National Institutes of Health for TMAU research, which on September 2009 had only $6,350, and by December 2010 has $28,486.00.


Year 2011 future goals
to unite experts and sufferers
to promote research:

  1. MEBO-Eliapharma begins testing the approximately 50 people currently on waitlist, and expand to the rest of the Western Hemisphere

  2. Support Eliapharma's efforts in pursuing research in the grant seeking process targeting the Canadian National Institutes of Health, local universities, and private pharmaceultical companies.

  3. MEBO Test Program is proactively working with renown experts on setting up its TMAU Test Program with a lab located in the Eastern Hemisphere in which a doctor's orders would not be required and which would support future research - similar to what is being set up in the Western Hemisphere with Eliapharma Services, Inc.

  4. MEBO's Second Annual Meetup in Washington DC on April 9th and 10th.

  5. With Charity status, pursue grants and funding to further develop the TMAU Service Dog Program with Pawsibilities Unleashed.

  6. Open a MEBO Store to raise funds

  7. Continue with our Raising Awareness Campaign by writing to the various School Boards in the US and UK recommending guidelines to school faculty and administration on how they can assist and support students who presents with body odor - referring them to the letter to doctors and TMAU write up written for us by Nigel Manning noted above, and to the online National Institutes of Health pages on TMAU, and referring the students to this blog for testing options and support group forums. Our Spanish community volunteers, and members of other languages forums, such as the Italian and Polish communities, who have been in communication with MEBO on a regular basis can help us spread this same information to their respective countries as well.

  8. Support the NORD Fund in pursuing research with the US National Institutes of Health grants-seeking process.

  9. Expand communications with experts and sufferers from all parts of the world by establishing relations with members of all body odor forums and experts from as many countries as possible.

María de la Torre
President and Executive Director

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