Welcome To MEBO Research
MEBO Research is a sufferer-founded Public Charity in the United States since April 21, 2010, under section 501(c)(3) of the Internal Revenue Code under classification of Public Charity, and a patient advocacy international campaign to research genetic metabolic conditions, particularly those resulting in systemic body malodor and halitosis. Contributions to MEBO are deductible under section 170 of the Code. The Charity is qualified to receive tax deductible bequests, devises, transfers or gifts under section 2055, 2106 or 2522 of the code. Thanks to donations awarded by its members and pro-bono services from the legal as well as the educational, financial and scientific/medical community in the US and UK, MEBO has achieved this status. Within months of its inception, the MEBO International Test Program was launched, with aspirations of pursuing grants from government and private agencies.
MEBO Research is also a Not for Profit Limited by Guarantee Company (Number 6810631) registered in England and Wales since February 5, 2009, currently aspiring to become a Charity in 2012. Within only months of its inception, a small exploratory study was underway thanks to the gracious contributions of donators, volunteer testers, discounted test rates from our supporters, and pro-bono experts' services. As a Public Charity, MEBO is now in a better position to pursue large research grants and endowments from private foundations and governmental agencies in multiple countries in order to further its research efforts to find the proper diagnosis to all difficult to control systemic body malodors and halitosis and to find a cure.
Mission
MEBO Research's Mission is to initiate formal scientific research into body malodor and halitosis conditions, including but not limited to Trimethylaminuria, including other disorders resulting FMO3 deficiencies and environmentally acquired conditions. In addition, small, sufferer-driven studies will be carried out from time to time in an attempt to detect and establish with exploratory test results patterns in symptoms among the various conditions.
Although genetic trimethylaminuria is a rare disorder, other types of body odor conditions are also likely to be seen as rare by the scientific and medical community. This may be due to the lack of diagnosis and consequent lack of attention given to other types of body malodor disorders. Due to lack of dispersion of scientific information in the medical community regarding body odor conditions, most physicians may have never heard of transient difficult-to-control body odor triggered by hormonal changes, stress, and/or diet. As a result, physicians are likely to resort to an Olfactory Reference Syndrome diagnosis, and thus, the true underlying body odor diagnosis has not been represented. As noted in a research paper, Individuals Reporting Idiopathic Malodor Production: Demographics and Incidence of Trimethylaminuria. by Wise PM, Eades J, Tjoa S, Fennessey PV, Preti G., "We speculate that testing also might reveal cases of trimethylaminuria among those diagnosed with certain psychologic disorders, including olfactory reference syndrome." It is therefore MEBO's primary Mission to initiate formal scientific research to better identify them, and to then disperse this information throughout the medical community all over the world, in order for sufferers to received the proper diagnosis and treatment. Thus, an accurate number of affected individuals would be better represented.
With the recognition that society at large is uninformed of the existence of uncontrollable body odor conditions, one of the chief objectives of MEBO's Public Relations Program is to raise social and political awareness through public education endeavors, consisting of email and mail campaigns, advertising, public speaking in schools events, and other similar avenues, and to also support and complement similar independent raising awareness campaigns carried out by other similar organizations. MEBO's Community Outreach Program's objective is to reach out to the community of sufferers not only for emotional support, but also to direct them to the proper social agencies that may assist with educational, employment, and legal concerns. In many cases, MEBO has first needed to educate these agency about medical conditions resulting in uncontrollable body malodor in hopes that they may in turn assist sufferers.
Strategies
MEBO's three main strategies are :
1: Self-help : This strategy involves ways in which sufferers can fund exploratory studies as a group under the supervision of experts. These exploratory studies actively look for a profile of systemic types of malodors to establish theories for future larger scaled research projects. An example would be the MEBO-Biolab Gut Dysbiosis Study, conducted under the supervision of Dr. Irene Gabashvili, in which volunteers fund their respective tests. In addition, MEBO Research has launched a sufferer-funded TMAU Test Program with the Cleveland Clinic, "One of America's Top 4 Hospitals", U.S. News & World Report 2010-11, 'Best Hospital' Rankings, in the United States. More details about these programs are discussed in the About MEBO section of this website.
2: Professional help : Proactively pursue and initiate large scale research projects, such as the Alveolar Breath Study with Menssana Research, which may be partially sufferer-funded and partially grant-funded. MEBO Research has also established an Institutional Review Board (IRB) soon to be registered with the U.S. Office for Human Research Protections of the Department of Health and Human Services (DHHS). A page dedicated to this Ethics Committee will be added to this website in the near future.
3: Raising awareness : Promote international recognition in the medical community and society at large of systemic causes of body odor, including genetic/metabolic body malodor and halitosis, and environmentally acquired body malodor and halitosis. One of the most powerful tools to raise awareness in society is to develop diagnostic tests through scientific research, which would identify the multiple causes of body odor, so that sufferers can take them to their physician. Thus, physicians can then certify to employers, educators, legislators, and the legal system that these difficult to control medical conditions do indeed exist. As society becomes better informed, the sufferer would consequently have a better opportunity for laws to be passed to protected him or her with employment accommodations and to protect against discrimination.
MEBO Research has been involved in numerous raising awareness programs, including, but not limited to,
- MEBO US Public Relations Director, Glenna Gonzalez, MBA, Day on Capitol Hill for MEBO Research to meet with Congressional Staffers of two Senators, three House of Representatives, and the Republican Majority Leader.
- MEBO UK's Public Relations Director, Karen James, led the way for our international community to participate in the Raising Awareness Campaign aimed at the UK medical system. As a result of her leadership, ten body odor questions on “Nutritional metabolic and endocrine disorders "TMAU" were published in the NHS Database of Uncertainties about the Effects of Treatments (UK DUETs), and can be seen in the Library of NHS UK. Six (6) of these listed uncertainties have referenced their source to MEBO Research (see, "View Details of each question"), and four (4) of them reference the source to the DUETs Editorial Team.
- In June 2010, MEBO Research launched a Raising Awareness campaign in the Mental Health Field in response to an invitation for our community to participate in a study conducted on Olfactory Reference Syndrome (ORS) by the Massachusetts General Hospital and Harvard Medical School. As a result of this and other efforts, on January 11, 2011, the American Psychiatric Association revised and updated the DSM-5 Development category of Olfactory Reference Syndrome, as noted on their website stating, "ORS appears to have important differences from all of these [Psychotic] disorders." In addition, it states, "ORS's current classification is problematic, as this syndrome appears to characterize a distinct and suffering group of people who may be misdiagnosed or unsuccessfully treated because ORS is not clearly identified in DSM...Including ORS in an Appendix would potentially stimulate further systematic research, using specified diagnostic criteria."
Possible side effects of some of the metabolic conditions we study:
- Associations between choline types, TMAO production, and Cardiovascular Disease
Studies using germ-free mice confirmed a critical role for dietary choline and gut flora in TMAO production, augmented macrophage cholesterol accumulation and foam cell formation. Suppression of intestinal microflora in atherosclerosis-prone mice inhibited dietary-choline-enhanced atherosclerosis. Genetic variations controlling expression of flavin monooxygenases, an enzymatic source of TMAO, segregated with atherosclerosis in hyperlipidaemic mice. Discovery of a relationship between gut-flora-dependent metabolism of dietary phosphatidylcholine and CVD pathogenesis provides opportunities for the development of new diagnostic tests and therapeutic approaches for atherosclerotic heart disease. Gut flora metabolism of phosphatidylcholine promotes cardiovascular disease. Zeneng Wang, Elizabeth Klipfell, Brian J. Bennett, Robert Koeth, Bruce S. Levison, Brandon DuGar, Ariel E. Feldstein, Earl B. Britt, Xiaoming Fu, Yoon-Mi Chung, Yuping Wu, Phil Schauer, Jonathan D. Smith, Hooman Allayee, W. H. Wilson Tang, Joseph A. DiDonato, Aldons J. Lusis & Stanley L. Hazen, Centre for Epilepsy, Maudsley Hospital, London, UK. 1997 Aug 6. Nature 472, 57–63 (07 April 2011) doi:10.1038/nature09922 Received 29 July 2009 Accepted 09 February 2011 Published online 06 April 2011
- Trimethylaminuria (TMAU) -like odor linked to Epilepsy
Literature reports only two cases affected by trimethylaminuria and epilepsy. We describe a third patient who, from the age of seven, was affected by temporal focal seizures with nocturnal episodes of nausea, vomiting, anxiety and autonomic activation followed by headache...Our patient also showed learning disabilities despite a normal intelligence quotient (IQ), while another described patient had an IQ varying from borderline to mild mental retardation. We discuss the association between trimethylaminuria and epilepsy, and formulate some hypotheses on the relationship between trimethylamine convulsive effect and the anticonvulsive role of levetiracetam. Epilepsy and trimethylaminuria: A new case report and literature review. Pellicciari A, Posar A, Cremonini MA, Parmeggiani A.Brain Dev. 2010 Oct 20. [Epub ahead of print] PMID: 20970269 [PubMed - as supplied by publisher]
- Trimethylaminuria (TMAU) suggested to be linked to Seizures
A 16-year-old left-handed male is presented with a history of seizures associated with a fish-like odour and behavioural disturbances thought to be related to trimethylaminuria...The episodes would start with a fish-like odour, followed by seizures occurring in clusters and behavioural disturbance consisting of agitation, mixed affective symptoms, auditory hallucinations and delusions. A urinary assay of trimethylamine (TMA) was elevated, confirming the diagnosis of trimethylaminuria in this patient. He was treated with a choline-restricted diet with resolution of his symptoms.Trimethylaminuria associated with seizures and behavioural disturbance: a case report. Trimethylaminuria associated with seizures and behavioural disturbance: a case report. McConnell H, Mitchell SC, Smith RL, Brewster M., Centre for Epilepsy, Maudsley Hospital, London, UK. 1997 Aug 6. PMID: 9304724 [PubMed - indexed for MEDLINE]
Research We Would Like to See Done:
*Develop ways to increase FMO3 function in those with FMO3 deficiency (eg increase enzyme function, or add external FMO3 enzyme to the system via probiotics or supplement or otherwise)
*To develop helpful ways of coping with the problem, such as portable smell-checkers
*An agreed international testing standard for TMAU and other metabolic conditions resulting in body malodor and halitosis
*Investigation of other malodourous compounds as possible malodor sources in humans, such as isovaleric acid
*International database of TMAU results
*Are all women with lower functioning FMO3 enzyme prone to Bacterial (Gardnerella) Vaginosis ?
*Add trimethylaminuria test to the newborn screening program
*Malodorous volatile organic compounds testing
*How does TMAU affect choline blood levels, including before diagnosis ?
* 1 person or more to have their urine tested over a month for Volatile Organic Compounds
*Founding of an International Body Malodor and Halitosis research center & clinic
If you are an interested expert with any ideas, feel free to contact MEBO
MEBO short term goals
*To do informal case studies with volunteers using available tests,
*To post the results in this website and/or English and Spanish blogs,
*To develop relations with experts.
MEBO long term goals
*To establish a body Malodor & halitosis clinic and research center,
*To encourage professional research into metabolic body malodor,
*To develop helpful ways of coping with the problem, such as portable smell-checkers.
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