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MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
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MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
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"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
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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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