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CURRENT NEWS / INFORMATION, 2018:

IMPORTANT OFFICIAL MEBO RESEARCH CLINICAL TRIALS

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:
  • Gut Permeability Profile. PEG 400 is used as a probe and measured in urine passed for the following 6 hours at 11 different molecular weights to establish the quantity of each absorbed through the gut wall. Extraction and separation of PEG from urine is done by ion exchange chromatography and capillary GLC.
  • Gut Fermentation Profile. Blood alcohols - ethanol, methanol, butanol, propanol and short chain fatty acids - are measured by gas-liquid chromatography.
  • D-lactate test. D-lactate is measured by centrifugal analysis using the specific enzyme D-lactate dehydrogenase, which does not react with L-lactate
  • The urine indicans (Obermeyer) test. Detection of indican in the urine depends upon its decomposition and subsequent oxidation of indoxyl to indigo blue and its absorption into a chloroform layer
  • Breath test for small intestinal dysbiosis. Breath hydrogen and methane are measured by gas-liquid chromatography. The patient is given 10 gm of lactulose in 200 ml of water and alveolar air samples are collected every 20 minutes for 3 hours
  • Functional B vitamins profile, by measuring the activation of a red cell enzyme that is dependent upon an adequate concentration of a particular vitamin for full activity. The assay relies on normal metabolism of the vitamin to its native form and the presence of other non-vitamin cofactors.


Looking For Volunteers for a Gut Microbiome Research Test!

MEBO is currently initiating a Gut Microbiome Research Study to explore sufferers' gut microbiome with Irene Gabashvili, PhD as the Principal Investigator and with the support of uBiome. The goal is to begin to identify which gut microbes are the culprit in producing odorous chemicals in our bodies. It has always been very expensive to get the necessary test for this, and even when one would become available, there was no research in place to compare the results with other persons who suffer from an odor condition. Therefore, MEBO is joining 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 insurances. 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.

In addition, the Citizen Research Group from Germany is organizing an exploratory study using uBiome's fecal microbiome test and those of other labs, which involves genetic sequencing techniques.

FOR FULL DETAILS AND HOW TO PARTICIPATE IN THS GROUND-BREAKING RESEARCH, PLEASE SEE OUR DETAILED BLOG POST.

Annual MEBO Conference & Meetup, 13-16th April, 2018; Savannah, GA

Fairfield Inn & Suites
By Marriott
17027 Abercorn St
Savannah, Ga 31419
912-925-5050

AGENDA: This year's conference will address the following two questions:
  1. Why do I smell and/or PATM ("People Allergic to Me") ?
  2. What can I do to control the odor in a healthy manner ?

    Please, come and join us. There will be expert presentations via videos/PowerPoint presentation, handouts, and lots and lots of group discussion.
For detailed information, please see our Blog Entry on the Meetup.


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.  

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."
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-logo-press

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


DONATIONS

MeBO Research USA

Registered Charity
Click the Donate button to make a
tax-deductable donation here:

or paypal direct to :
tax-deductible-donations@meboresearch.org

MeBO Research UK
Only for donations made from outside USA.
Not tax deductible.
Supports the UK Company only.

or paypal direct to:  
donations@meboresearch.org

 
 

 

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