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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Monday, January 29, 2024

Living with MEBO

In the recent study by Cole and Drs. Shephard, Phillips and Janmohamed, in collaboration with our MEBO Research, the emotional landscape of living with MEBO/TMAU is laid bare, revealing a world where individuals are often met with misunderstanding and social exclusion. The respondents, all navigating the challenges of TMAU in the UK, shared heart-wrenching experiences of bullying, ostracism, and a profound lack of empathy from others. The workplace (36 respondents, 90%) and social settings (35 respondents, 88%), places where support and acceptance should thrive, turned out to be the most common arenas for these painful encounters. This societal blindness to their struggle not only amplifies their emotional burden but also deepens their sense of isolation. The survey uncovers a poignant truth: living with TMAU is not just a physical battle but a relentless emotional ordeal, marked by a constant struggle for acceptance and understanding.

The emotional turmoil doesn't end there. The study highlights a critical dilemma – to disclose or not to disclose their condition. For many, this decision is a double-edged sword. Revealing their condition might bring some level of understanding, yet it also risks further stigma and exclusion. This uncertainty breeds a unique kind of loneliness and stress, where the fear of judgment constantly weighs against the hope for empathy. The findings underscore a desperate need for a shift in societal perception and support structures. It's clear that these individuals are not just battling a metabolic disorder but are also fighting for their place in a society that often overlooks the invisible hardships they endure daily. The call for greater awareness and mental health support resonates through each response, painting a picture of a community in urgent need of empathy and a deeper understanding of their struggles.




REFERENCE

Flaherty CC, Phillips IR, Janmohamed A, Shephard EA. Living with trimethylaminuria and body and breath malodour: personal perspectives. BMC Public Health. 2024 Jan 18;24(1):222. doi: 10.1186/s12889-024-17685-w. PMID: 38238734; PMCID: PMC10797923.


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A EURORDIS and NORD Member Organization

Monday, November 13, 2023

Reflecting on MEBO Community Data from 15 Years Ago

Fifteen years ago marked the inception of the first survey within the MEBO community, exploring the efficacy of various treatments. The landscape of self-treatment in our community has been in constant flux. Popular remedies have evolved over time, and the effectiveness of these treatments varies widely. To continue advancing our understanding, we must persist in collecting more comprehensive and diverse data while seeking improved methods for data collection. Let's revisit the initial data collected 15 years ago. 

In 2008, probiotics and Chlorophyll/Copper Chlorophyllin products took the forefront. However, some community members reported worsening odor issues after using these remedies, as indicated by the red area in the corresponding pie chart, contrasting with green for effectiveness and gray for uncertainty. Many individuals discovered that perfumed products, including about half of reported deodorants, exacerbated their condition, while the other half proved suitable. Once-popular remedies like Mushroom extracts (ProM and Champex), Activated Charcoal, Baking Soda, and Hydrogen Peroxide have faded from discussions. Vitamin B2, despite being used by fewer than a quarter of respondents in 2008, remains a favored treatment, with some finding it effective. Oldenlandia and Coconut oil were used by (and deemed useful) by a small fraction of respondents, and intriguingly, someone even used Bleach, reporting that it worsened their condition.

Certain drugs intended for other conditions were reported to have secondary effects on odor, with Prilosec and Probathine being beneficial, while Anxiolytics, Antidepressants, and Antivirals had detrimental effects, aligning with recent findings related to the COVID-19 vaccine. Antifungals, Folic acid, Zinc, Calcium, and Magnesium never worsened the condition. However, digestive enzymes, contraceptives, and baking soda treatments were reported to make things worse in some cases.

In the late 2000s and early 2010s, interest in resveratrol, a compound found in red wine, peaked within the MEBO community, leading to extensive use and promotion. By the mid-2010s, DMB became a focal point of discussion, and Fluxovas entered the scene, garnering attention from 2020 onwards.

While probiotics continue to maintain popularity, there is a discernible shift towards personalization. Individuals increasingly recognize the importance of identifying probiotic strains that align with their unique physiology and health objectives. Our microbiome study revealed that individuals with higher cutaneous bacteria (and total bacteria) abundances in the gut benefited from reducing microbial diversity and overall bacterial counts, whereas those with lower abundances found advantages in increasing microbial diversity. This underscores the absence of a universal solution for probiotics.

The self-treatment landscape within the MEBO community is undergoing constant evolution, highlighting the growing importance of personalized solutions. Explore further insights in today's Olfactics blog.

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Wednesday, November 1, 2023

The Promise of E.esperance

We invite you to be part of the excitement, whether virtually or in person, at the ongoing iGEM competition in Paris. The spotlight is on the FSU team as they prepare to unveil their latest creation, the probiotic E.esperance, on November 2, 2023.

Now in its 20th year, the iGEM competition has become a cornerstone for a global community of synthetic biology enthusiasts. This extraordinary event draws together a diverse group of participants, including students, researchers, industry leaders, investors, startups, and policymakers, all united by their passion for synthetic biology.

iGEM, or the International Genetically Engineered Machine competition, serves as a dynamic platform for student teams to conceptualize and construct innovative biological systems using standardized genetic components known as BioBricks. Each BioBrick carries a unique identifier, such as BBa_K468006, and can be easily accessed through the iGEM Registry of Standard Biological Parts, offering a valuable resource for information.

E.esperance, the brainchild of the FSU team, is brought to life through a combination of BioBricks, including BBa_K468006 Roseovarius sp 217 TMM Generator, BBa_K468004 R. pomeroyi TMM Generator, and BBa_K4680008 Human FMO3 Generator. These parts come together to form a probiotic that could be a game-changer in addressing TMAU and making a profound impact on well-being of MEBO and PATM communities.

 

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A EURORDIS and NORD Member Organization