Welcome To MEBO Research
MEBO Research, Inc., (MEBO) is a sufferer-founded patient advocacy international campaign registered in the State of Florida, United States, since April 21, 2010, under section 501(c)(3) of the Internal Revenue Code, classification of Public Charity. MEBO’s Mission to initiate research into rare genetic metabolic diseases, particularly those resulting in systemic, difficult to control body malodor and halitosis, including, but not limited to, Trimethylaminuria. In addition, studies will be initiated to analyze and categorize gut microbiota and to characterize the genes that the microbes are expressing in an effort to identify and understand microbial communities that could produce malodor symptoms, and to identify effective targeted course of treatment to control symptoms, and preferably cure the condition.
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.
In an effort to protect the well-being and rights of sufferers who participate in any international studies initiated by MEBO Research, the MEBO Institutional Review Board (IRB), IRB00008681, was registered in the U.S. Department of Health and Human Services, IRB Organization, IORG0007232, and Federalwide Assurance, FWA00018466. The purpose of this Independent Ethics Committee or Ethical Review Board is for MEBO and research study participants to address procedural and ethical questions to the IRB members as studies are conducted and new programs are developed.
MEBO Research is proud to be an Organization Member of NORD, the National Organization of Rare Disorders (US), and an Organisation Member of EURORDIS, the European Organisation for Rare Diseases. Two MEBO Directors are Moderators of the Trimethylaminuria Community pages of EURORDIS and NORD’s partnership website, RareConnect.org. In addition, MEBO Research is listed as a patient organisation with Orphanet, and listed with Genetic Alliance.
MEBO Research’s Mission is to initiate formal scientific research into rare genetic metabolic diseases, particularly those resulting in systemic, difficult to control body malodor and halitosis conditions, including but not limited to Trimethylaminuria. In addition, studies will be initiated to analyze and categorize gut microbiota and to characterize the genes that the microbes are expressing in an effort to identify and understand microbial communities that could produce malodor symptoms, and to identify effective targeted course of treatment to control symptoms, and preferably cure the condition of our international body odor community.
Genetic trimethylaminuria is a rare disorder and other types of body odor conditions are likely to also 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 the various types of body malodor disorders, since some have yet to be clearly defined. As a result, the absence of dispersion of scientific information in the medical community regarding body malodor conditions, most physicians may have never heard of transient difficult-to-control body and/or breath malodor triggered by hormonal changes, stress, and/or diet and intestinal function or structure. Consequently, 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. Consequently, 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 focused on raising 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 three main strategies are :
1: Self-help : This strategy involves ways in which sufferers can unite to fund exploratory studies under the guidance and supervision of experts and the MEBO IRB. These exploratory studies proactively look for a profile of systemic types of malodors to establish theories for future follow-up 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.
2: Professional help : MEBO is steadfastly in close contact with experts throughout the world pursuing further research in genetic, metabolic, and any other potential cause of body malodour and halitosis conditions. 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.
3: International TMAU Test Program : MEBO Research has developed a TMAU Test Program, which looks for Primary and Secondary TMAU, measuring TMA levels and metabolic enzyme function involved in the metabolism of trimethylamine (TMA).
4: Raising awareness : This campaign intends to promote in the medical community and society at large, international recognition of and interest in 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 types and causes of body and/or breath malodor, 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 UK's Public Relations Director, Karen James, published the article, "My body produces an offensively pungent chemical," in InnovAiT of the Oxford Journals, Oxford University Press, InnovAiT 2012; doi: 10.1093/innovait/ins093. In addition, Karen spearheaded our communications with UK DUETs, NHS Evidence, National Institute for Health and Clinical Excellence to publish 10 body odour related uncertainties/questions, now found in the Library of NHS UK database, about the effects of treatment for TMAU.
- 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 with a link to this website (see, "View Details of each question"), and four (4) of them reference the source to the DUETs Editorial Team.
- MEBO US Community Outreach Director, Cheryl Fields, has been very proactive in MEBO’s Raising Awareness Campaign by telling her story, "Trimethylaminuria, Living with a rare disease" in her hometown newspaper, The Topeka Capital-Journal. Cheryl put Trimethylaminuria in the spotlight by creating a professional video for MEBO’s Raising Awareness Campaign. This video was later translated into other languages by RareConnect, A partnership of EURORDIS and NORD, and featured on MEBO Research’s exhibitor’s table Cheryl set up during the annual Rare Disease Day events at the NIH Clinical Center, Office of Rare Diseases Research of the National Institutes of Health/NCATS in Washington DC. Cheryl has been a constant inspiration and educator for our community with the many posts she has written in the MEBO Blog.
- 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.
- 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 [Psychosis] 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."
Accompanying conditions possibly related to some of malodor conditions:
- 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.