WELCOME TO MEBO RESEARCH
MEBO Research, Inc., (MEBO) is a sufferer-founded patient advocacy international campaign registered in the State of Florida, U.S., since April 21, 2010, under section 501(c)(3) of the Internal Revenue Code, classification of Public Charity. MEBO Research is also registered in England and Wales as a Not For Profit, Limited by Guarantee Company (2009). MEBO is a NORD and EURORDIS Organization Member and its directors are moderators of the Trimethylaminuria Community at RareConnect.org. MEBO is referenced as an Advocacy and Support Organization in websites like the Genetic Alliance and Orphanet. MEBO is the impacted group for the MRC Research Grant of £360,684, as noted in the 'Outcomes' Tab of the Gateway to Research, Research Councils UK site.
MEBO’s Mission is 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. Studies such as the MEBO Metabolomic Profiling, Exploratory Study of Relationships Between Malodor and Urine Metabolomics, ClinicalTrials.gov Identifier: NCT02683876, is ongoing to identifying metabolic signatures associated with malodor conditions. In addition, MEBO pursues studies of analysis and categorization of gut microbiota to characterize the genes that the microbes are expressing in an effort to identify and understand microbial communities that could produce malodor symptoms. The aim is to identify effective targeted course of treatment to control symptoms, and preferably cure the condition as a result of these and other research.
Additionally, MEBO focuses on bringing together the world-wide community, through local and online support groups with peer-to-peer focused communications. The MEBO Research website, blogs, and online support groups in English, Spanish, and Portuguese provide a great deal of support and information into these rare diseases to many sufferers around the world.
A BRIEF SUMMARY OF METABOLIC BODY ODOR:
Metabolic body malodor occurs when one or more of our internal cell enzyme(s), such as the Flaving containing mono-oxygenase3 (FMO3) metabolic enzyme, is deficient, rendering the the body unable to deodorize an odorous chemical. Consequently, a significant amount of the odorous unmetabolized volatile organic compound (VOC) builds up in the body and exits through the skin, nose, mouth, and other orifices.
Genetic trimethylaminuria is one such example of these rare metabolic malodor disorders. Difficult-to-control body and/or breath malodor can be triggered by hormonal changes, stress, and/or diet and intestinal function or structure. In many cases, physicians are likely to resort to an Olfactory Reference Syndrome diagnosis, a psychological diagnosis, and thus, the true underlying body odor diagnosis is not represented. As noted in a research paper, Individuals Reporting Idiopathic Malodor Production: Demographics and Incidence of Trimethylaminuria. [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.”
MEBO also recognizes that there are many unknown body odors which have yet to be classified and investigated, some falling under the term "Fecal Body Odor," or "FBO."
We hope to investigate the symptoms, causes, and gather sufferer feedback in reported cases and find ways to investigate this prominent population of the odor sufferer community.
MEBO BLOG: Visit our long-standing blog for an extensive archive of knowledge.
VIEW MORE IN-DEPTH INFORMATION ABOUT TRIMETHYLAMINURIA.
MEBO’s main strategies are :
1: Encourage Self Help
2: Engage Professional Help
3: International TMAU Test Program*
4: Raising Awareness in the Public and Medical Community
* The latest MEBO TMAU Urine Test program ran from July, 2016 until June, 2017. This program is currently re-structuring.
Please subscribe to our Blog if you wish to be notified when it is restarted.
MEBO's goal in creating a TMAU Urine test program, is to provide low-cost testing for all sufferers.
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