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CURRENT NEWS / INFORMATION, 2018:
IMPORTANT OFFICIAL MEBO RESEARCH CLINICAL TRIALS Important- NEW: June, 2018: NCT03582826 - Ongoing (Visit clinicaltrials.org listing) "Dynamics of the Gut Microbiota in Idiopathic Malodor Production" Summary: A new MEBO study which includes malodor/ PATM gut microbiome sampling coupled with mental/physical health assessment over a longer term. - Principal Investigator: Irene Gabashvili, PhD., MEBO Scientific Director MEBO RESEARCH is proud to announce it has recieved a generous grant from uBiome (ubiome.com) to facilitate a larger-scale study focused on not just test results, but observing patterns in each participant's gut microbiota and coupling that data with their accompanying odor/PATM symtoms, mood / mental health data (through a "Life Quality" consented form). Irene Gabashvili, PhD, will compare all the participants's observations with other in order to classify them, while also using all their mental/physical self-reporting data history for a more comprehensive, holistic assesment into possible gut microbiome data and psycho-social /health correlations. This is a simplified explanation whereas Irene has developed a truly unique and comprehensive approach to studying the 'whole picture' of a sufferer over the course of a time period. A great deal more is involved in this coordinated research effort between MEBO and uBiome as we share in mutual goals to explore these and other questions throughout this study. This study is unique in that it aims to begin an understanding of not just gut microbiome sampling and data, but also mental and physical state information at the time of gut microbiome sample collection. As currently organized, each study participant should be granted 3 (three) sample kits in order to better record a wider range of odor (and/or PATM) experiences and associated mental/health information. NCT03582826 - Ongoing - Visit clinicaltrials.org listing. More Information on this specific study from The MEBO Blog More Information on this specific study from The Aurametrix Blog (by Irene Gabashvili, PhD) It is best to read both blog posts to fully understand the study. The uBiome website (for informational purposes only, please do not contact uBiome directly to enter this particular study) NCT02683876 - Completed Exploratory Study of Relationships Between Malodor and Urine Metabolomics Canada and United States 2016 - ongoing In this study, metabolite profiling analysis will be carried out on urine samples of individuals with malodor conditions related to metabolism inefficiencies. Metabolic profiles will be identified using the metabolomics equipment located in the NMR, HPLC and MS facilities of the Metabolomics Innovation Centre (TMIC). Multivariate statistical analyses will be used, as well as other approaches to mine complex data from heterogeneous sources. NCT03451994 - Active, not recruiting Exploratory Study of Volatile Organic Compounds in Alveolar Breath United Kingdom and United States 2013 - ongoing The purpose of this study is to identify metabolic signatures associated with malodor conditions. The investigators will perform state-of-the art metabolomics tests and bioinformatic data mining to explore if conditions leading to malodor can be screened by metabolomic profiling of urine samples. In this study, metabolite profiling analysis will be carried out on urine samples of individuals with malodor conditions related to metabolism inefficiencies. Metabolic profiles will be identified using the metabolomics equipment located in the NMR, HPLC and MS facilities of the Metabolomics Innovation Centre (TMIC). Multivariate statistical analyses will be used, as well as other approaches to mine complex data from heterogeneous sources. NCT02692495 - Completed Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis United Kingdom 2009 - 2012 This study is designed as a retrospective cohort study to evaluate the potential of diagnostic procedures in defining populations of patients self-reporting unexpected and uncontrollable episodes of body odor and/or halitosis. The cohort - generally healthy individuals who had underwent multiple diagnostic tests recommended by their physicians and had not been diagnosed with any known medical condition - expressed their interest in trying gastrointestinal and nutritional diagnostic tests offered by Biolab Medical Unit. Our retrospective analysis will determine if these tests were useful as potential screening tools for metabolic body odor and halitosis. Many yet uncharacterized medical conditions including inborn and acquired errors of metabolism or skewed microbiome could be responsible for unpredictable and uncontrollable episodes of body odor and halitosis. These conditions have dramatic impact on the quality of life and socioeconomic outcomes of sufferers. Yet clinics and specialized malodor centers do not provide tests for diagnosing malodor other than trimethylaminuria (TMAU). Self-reported odor problems are often dismissed if are not organoleptically evaluated by trained odor judges that are not readily available during malodor flare-ups. The aim of this study is to analyze effectiveness of existing gastrointestinal and nutritional tests for the assessment and investigation of self-reported malodors. Diagnostic tests included:
Still Looking For Volunteers for the (Indepenent Study) "Gut Microbiome Research Effort"! - ongoing since Jan, 2018. Not to be confused with the newly formed MEBO-uBiome Research grant study mentioned at the top of this page (June, 2018), MEBO is continuing the (Independent Study) "Gut Microbiome Research Study" to explore sufferers' gut microbiome; the team involves both Irene Gabashvili, PhD, of MEBO, and Danny Kuntz of Germany's Citizen Research Group.
The overlying goal of this study is to begin to identify which gut microbes are the culprit in producing odorous chemicals in our bodies. Due to the expense involved in genetic analysis, and a lack of comparable information of this nature, MEBO joined efforts with uBiome to assist in the testing and analysis process. The great thing about using uBiome's test is that it is currently covered by most U.S. health insurance. This makes it free for all persons residing in the US with valid health insurance! If not, uBiome also provides other payment alternatives. Mebo has also arranged for a 10% discount for those who cannot get it covered by US insurance. "Citizen Research Group" (through Danny Kuntz) from Germany aims to use a sufferer's uBiome's fecal microbiome test results, and the microbiome test results of other labs, which involves genetic sequencing techniques - for further microbiotic strain identification theories and analysis. The first step in this study is to get uBiome test results-- and then share/donate your results data (downloaded in .CSV or other format) with both Irene Gabashvili, PhD and Danny Kuntz. Send your .CSV data file from uBiome to irene.gabashvili@meboresearch.org, danny.kunz@gmx.de, and maria.delatorre@meboresearch.org. While no personal information such as name or email will ever be published publically or stored indefinitely, should you wish to ensure a fully 'anonymous' transfer of this data, please send your results only to maria.delatorre@meboresearch.org directly, indicating you wish to pass them on to Irene and Danny and Maria will "de-indentify" any personal information. TO VIEW THE ORIGINAL INFORMATION ANNOUNCING THIS GROUND-BREAKING RESEARCH AND OFFICIAL DIRECTIONS, PLEASE SEE THIS DETAILED BLOG POST. Please note that this blog post was written in January, 2018, and the study has been ongoing since then. |
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 "Dynamics of the Gut Microbiota in Idiopathic Malodor Production" and "MEBO Metabolic Profiling" are ground-breaking studies which explore innovative insight into conditions of malodor and/or PATM. The study "Exploratory Study of Relationships Between Malodor and Urine Metabolomics" (ClinicalTrials.gov Identifier: NCT02683876) was created 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 conditions as a result of these and other research efforts.
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.
| Mental Health: VIEW OUR MONTHLY MENTAL HEALTH COLUMN (Blog) in association with the MEBO Mental Health Program. The program is directed by Crissan Rosalia, Health Psychologist, MSc., MEBO Mental Health Director. |
MEBO BLOG: Visit our long-standing blog for an extensive archive of knowledge.
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." Included in the scope of MEBO's work, is investigation into a condition most commonly called "PATM" ("People Allergic To Me"). More information on this condition and the studies which support proof of it's ongoing investigation among researchers can be found in the MEBO Blog - please click here for more information on PATM.
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 / PATM sufferer community.
MEBO BLOG: Visit our long-standing blog for an extensive archive of knowledge.
VIEW MORE IN-DEPTH INFORMATION ABOUT TRIMETHYLAMINURIA.
VIEW MORE IN-DEPTH INFORMATION ABOUT PATM.
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
TESTING:
* 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.
PROFESSIONAL NETWORK:
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
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