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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

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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

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BO Sufferers Podcasts

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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
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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

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

Friday, November 1, 2024

Insights from a PATM sufferer’s Perspective on Potential Research Directions

In a letter MEBO received from Zhejiang, China, Bowei shares observations about PATM that he believes are important for scientists to study. His main points include:

  • PATM Amplifies Nearby Smells, creating a “super-smell effect” that intensifies odors around PATM sufferers.

  • PATM Likely Spreads Primarily Through Breath, as people with the condition seem to release most of the problematic components through their mouths and noses rather than their skin.

  • PATM May Heighten Sensitivity to Allergens, making people nearby feel itchy or sneezy, especially in environments with dust or allergens.

  • PATM May Be Widely Underreported or Misdiagnosed as a mental health condition.

  • PATM Could Be Caused by Unique Microbes, potentially including rare bacteria living in the gut or on the skin. 

We agree with these insights but also think skin emissions may play a role, potentially intensified by breath. Our recent studies support these observations: our breath metabolome research revealed that PATM  amplifies certain enviromental compounds, like propylene oxide, while our microbiome study found increased numbers of odor-causing bacteria. We believe these bacteria are secondary to other, possibly rare microbes residing in the gut and on the skin. But there seem to be more than one type of these microbes.

Here is Bowei's original letter:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I am a PATMer from Zhejiang, China. Thank you very much for your attention to PATM. I am writing this email to provide additional details regarding the symptoms and suggest directions and content for subsequent research. Should you still be engaged in PATM research, the following content may be beneficial to your endeavors.

 

1. The core characteristic of PATM in terms of odor is probably to amplify the odor of other gases. This is an imperceptible feature. Many people with PATM believe their body odor is severe. In fact, the root cause may not be the odor itself, but that PATM will amplify the smell of other olfactory gases. It not only amplifies the smell of PATM patients themselves, but also amplifies the smell of other people and objects in the surrounding environment. The principle may be that substances similar to agglutinogens gather some odor molecules in the air together, allowing more olfactory substances to contact the olfactory epithelium almost at the same time. The result of this effect in the brain is that a strong odor is smelled, while in fact the overall concentration of odor molecules in the air may not change significantly. At the same time, PATM has a special symptom of easily picking up odors from the environment, which may be related to the speculated principle of agglutination. Therefore, the gas released by PATM may have some gas components with higher content than that of normal people. These components may just be more easily aggregated by PATM agglutinogens, leading to excessive absorption and excessive release of PATMers, but not necessarily excessive production in their bodies. Some PATMers have repeatedly verified the characteristics of amplified odors in daily life, but there remains a lack of scientific, rigorously controlled experiments to substantiate this. Amplified odors are very difficult to detect, but I think it is the core factor that causes trouble for PATM. Should this pique your interest, you might consider designing an experiment to prove this hypothesis, which I believe would be highly advantageous.

 

2. Gases exhaled orally and nasally may be the primary means by which PATM releases abnormal components. The quantity of abnormal components exhaled through the mouth and nose per unit time may significantly exceed the amount released by the skin of the entire body. If feasible, incorporating a method for collecting exhaled gases from the mouth and nose could be beneficial. Moreover, utilizing the real-time exhaled gases of PATM patients for experiments may be preferable to remote collection, as the core components might be unstable.

 

3. PATM may induce allergies due to an "amplification" effect rather than direct effects.  According to the experience of some PATMers, the more "dirty" the environment, the more likely PATMers are to cause allergic reactions in people around them. It may be that PATM does not directly produce substances that stimulate human allergies, but in some way makes potential allergens more irritating, or makes people more susceptible to allergies. I am uncertain if you plan to verify whether the gases released by PATM cause changes in specific physiological indicators of humans or animals. If the gas of PATM alone cannot cause obvious changes in allergic indicators, it will be helpful to consider adding common potential allergens, or simply making the environment "dirtier", to verify the amplification effect of PATM in this regard. That is, substances that normally do not cause changes in allergic indicators in humans or animals may cause significant changes in related indicators in humans or animals after exposure to PATM gas.

 

4. The number of people suffering from PATM may be much higher than previously estimated. It is likely that more PATM sufferers are diagnosed with mental illnesses, and they do not use the name PATM to refer to their symptoms. At the same time, I am quite certain that PATM gas will not only indirectly cause psychological problems, but more importantly, it will directly cause abnormalities in the mental system (both PATMers and people around them will experience abnormalities), such as irritability, brain fog, fatigue, and abnormalities in certain related indicators. In this regard, I suggest finding people with PATM symptoms to serve as the providers of PATM gases for the experimental group, and finding some animals for comparative experiments to observe the animals' irritability, cognitive decline, fatigue, changes in related blood indicators, etc., to verify this point.

 

5. The root cause of PATM may be associated with a rare microorganism. Based on the very few cases of "infection" and recovery, perhaps the culprit of PATM is some rare microorganism that is difficult to spread but can be relatively stably colonized in the intestines or the human body after infection. Although there appears to be no evidence linking PATM to microorganisms, I personally think that the search for pathogenic microorganisms is the right direction.

 

I hope these suggestions prove helpful, especially the first point mentioned above, which is of great importance. In addition, according to ICD-11, PATM may be "officially" diagnosed as olfactory reference disorder (ORD); however, diagnosing PATM as a mental illness is clearly a misdiagnosis. Therefore, at present, it is deemed more important to first prove the various physiological effects caused by PATM gas and to correct the inaccuracies in ICD-11 regarding ORD. The abnormal gas composition can be considered in subsequent research. I suggest initially finding people with PATM symptoms, conducting animal comparison experiments on the various symptoms caused by PATM gas in the experimental field (the spatial distance between the experimental group and the control group should be as large as possible to avoid gas flow affecting the results), and then proceeding with subsequent research in the order of gas properties, gas composition, microbial species, microbial location, and decolonization.

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Bowei hopes that researchers will investigate these ideas, which may improve our understanding of PATM and help develop effective treatments. Initial studies could focus on isolating and identifying gas compounds and microbial markers unique to PATM sufferers, followed by animal model tests to assess the physiological and neurological responses to PATM-related gases. This perspective adds to the call for both empathy and rigor in the exploration of rare conditions like PATM.




 

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Monday, June 10, 2024

Leveraging Existing Technologies While Awaiting Advanced Detection Methods

Living with MEBO can be challenging and frustrating. While we await the emergence of specialized personal odor testing devices that can accurately detect and measure trimethylamine, there is an opportunity for individuals in our community to contribute to research on long-term environmental exposures. These exposures could include compounds responsible for PATM and MEBO. 

Volatile organic compounds (VOCs) emanating from human skin and exhaled breath are of great interest to researchers in medical and forensic fields. These compounds provide valuable insights into our health, metabolism, and interactions with the environment. However, the study of VOCs is currently limited by the methods used for sample collection and pre-concentration.

One promising technology in this field is the use of wristbands designed to absorb VOCs. These wristbands have been successfully used in studies exploring the complex relationships between the human skin microbiome and the attractiveness of individuals to mosquitoes, as well as the effects of diet and personal care products. By collecting and analyzing the VOCs absorbed by these wristbands, researchers can gain a better understanding of the chemicals we are exposed to in our daily lives and those emanating from our bodies.

Trimethylamine (TMA) presents a significant challenge for detection due to its low abundance, volatility, and unique properties. TMA’s polarity affects its behavior in various contexts, from odor perception to solubility. While traditional wristbands can accumulate a wide range of VOCs, including those related to food exposure and antimicrobial soaps, not all materials have a high affinity for TMA, which hinders selectivity. More research is needed to improve wristbands and other samplers to better detect TMA and other challenging compounds.

Understanding chemical exposure in our daily lives is crucial for public health. A recent innovative study aims to achieve it by enlisting volunteers to wear specialized wristbands for seven days. These wristbands are designed to absorb a variety of chemicals, providing a comprehensive view of the substances individuals encounter in their environment and those emanating from their bodies.

By participating in this study, you can help researchers gather data that could eventually allow for the comparison of results from MEBO community. This research has the potential to benefit our community by providing new insights into long-term odor issues and environmental exposures. 

If you are interested in participating in this study and have questions, please contact us at studies@aurametrix.com or share your insights on Facebook. 

The study is conducted by our friends at Vanderbilt University, led by Dr. Wei Zheng, Anne Potter Wilson Professor of Medicine, and Dr. Martha Shrubsole. 

To join, click this link

Eligibility: Adults ages 40-70 living in Alabama, Arkansas, Delaware, District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, Missouri, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, West Virginia.


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Saturday, June 8, 2024

message from FSU IGEM 2024 team (re TMA Breathalyzer)

About iGEM and it's annual competition (this year Oct24)
The iGEM Competition is an annual, worldwide synthetic biology event aimed at undergraduate university students, as well as high school and graduate students. The iGEM Competition gives students
Click to expand for more details the opportunity to push the boundaries of synthetic biology by tackling everyday issues facing the world. Multidisciplinary teams work together to design, build, test, and measure a system of their own design using interchangeable biological parts and standard molecular biology techniques.

The Florida State University 2023 team took an interest in solutions for Trimethylaminuria.
They developed a 'probiotic' that metabolizes Trimethylamine (TMA) in the gut.
As far as we know they got a small grant from FSU to continue after the 2023 iGEM competition.

FSU iGEM team 2024 project : a TMA Breathalyzer.
A TMA sensor is very much needed as most sufferers are anosmic to their smells.
It also seems that often close relatives and other 'loved' ones may be anosmic too (1 theory being they are genetic mix carriers, not enough to be sufferers). 
It's unknown why this is (seems to be true for all types of BO or Halitosis ?).
Theories are like e.g. you get used to it (like lillies), or the brain ignores blood odors.

The 'health' research system has had little interest in TMAU.
Once you understand the system, its a bit surprising any therapy is discovered (at least, within decades).
The covid vaccine showed what was possible when the system focus was sensible. 
Normally that would have taken a decade or 2.

Message from FSU iGEM Team
We are pleased to post a message from the 2024 FSU iGEM team.
Thank you FSU iGEM 2023 and 2024 for your interest in TMAU.
The anti-TMA probiotic concept and a TMA Breathalyzer is as good a combo we could wish for (in terms of a current realistic working therapy). 
Hello MEBO Community,  

Our names are Megan Perusse and Lucas Bonassi, we are third year undergraduate students at Florida State University, and we are the co-leads for the 2024 FSU iGEM team. We just wanted to reach out and update the community on the 2024 project.  

Each year, the iGEM team consists of new members, and those new members select a new project topic to focus on. The 2024 team was moved by the struggles of the TMAU patient community and inspired by the potential impact of the 2023 team, so we chose to continue
 focusing on TMAU for this year’s project. However, we are not continuing to work on the probiotic that was developed by the 2023 team. Further research on the probiotic has been taken up by the FSU Institute for Pediatric Rare Diseases, so we unfortunately
 do not have up to date information regarding the progress of that project. Along with the work being done by the Institute, some current and past members of our 2024 and 2023 teams are working to create a start-up to focus on the potential commercialization
 and further development of the therapeutic and later diagnostic. 
 
Instead, the 2024 team is focusing on developing a breathalyzer device to measure TMA levels. This would theoretically be used along with the probiotic to measure how much TMA the body is producing and therefore how much of the probiotic to use. Our hope is
 that this will allow those of you in the community to gain more freedom in your lives and allow you to manage your symptoms around your life, rather than your life around your symptoms. 

Our engineering team has a design and are currently ordering the supplies needed to begin testing in the lab over the next few months. We will make sure to post another update regarding our progress before the end of the competition in October. At that time,
 we will share with you our project website and video presentation as well.  

Thank you for your continued support, and we are working hard to help the TMAU community!


other links :
https://jamboree.igem.org/2024/home

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