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

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

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


Participation info : LINK English

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BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect TMAU

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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

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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Jax said...

This was very interesting

Feb 3, 2024, 9:27:00 AM
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