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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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rareconnect.org 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

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

Sunday, December 22, 2024

Exploring PATM and Its Unbearable Reality

Condition that lacks a formal name can isolate you from the world. 

Josephine Franks brings to light the deeply isolating and misunderstood world of those living with PATM. This phenomenon causes people in proximity to sufferers to develop hay fever-like symptoms, including coughing, sneezing, and itchy eyes. 

Franks shares the stories of individuals like Medinah, a young woman whose condition confines her largely to her home, and Fahima, who has adapted her lifestyle to avoid triggering reactions in others. These personal accounts reveal the immense physical, emotional, and social toll of PATM. Sandra, a long-time sufferer, describes how the condition has led to anxiety, depression, and career setbacks, while Amir openly speaks about the profound loneliness and mental health challenges he faces.

While the article does not address our microbiome and metabolome findings, investigations by our scientists have uncovered significant heterogeneity in sufferers, complicating the search for patterns or consistent biomarkers. Communicating our research findings to the broader scientific community and securing adequate attention remain major hurdles.

Read the full article to learn more about the challenges, resilience, and some prior science surrounding this enigmatic condition: Read Josephine Franks's article on Sky News.

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Friday, December 20, 2024

Bias, Blood Types, and Community Patterns: A Five-Year Perspective

Five years ago, we shared statistics about blood type distribution within the MEBO community, based on data from our microbiome study (highlighted here). The results revealed that individuals with type O blood were significantly overrepresented, while type A blood was underrepresented compared to the general population. Additionally, the study found a higher prevalence of Rh-negative blood types within the community.

This week, a member of the MEBO PATM/TMAU Facebook group conducted an ad hoc poll about blood group types. The poll received 30 responses, where participants shared their blood types and Rhesus factors. The pie charts accompanying this post illustrate the responses, which reflect a similar pattern to our findings from five years ago. Once again, we observe an overrepresentation of O and Rh-negative blood types and underrepresentation of A.

Globally, Rh-negative blood types are relatively rare. Approximately 16% of the population in Europe and 15% in the United States are Rh-negative. The prevalence is even lower in other regions, such as sub-Saharan Africa (1-3%), Nigeria (6%), and countries like China, Japan, and Korea, where less than 1% of the population is Rh-negative. These contrasts underscore the unique distribution patterns observed within the MEBO community.

Group O is relatively overrepresented in the US general population but still constitutes less than 50% of population, while A constitutes about 40%. No country's general population matches the distribution of blood types in MEBO community. 

However, it is important to acknowledge the limitations of the recent poll. The potential for selection bias or response bias exists due to the nature of the poll and the audience it attracted. For example:

  • Self-selection bias: Individuals with type O blood may feel more inclined to participate because they perceive the question as directly relevant to them.

  • Confirmation bias: The person conducting the poll might unintentionally highlight responses that align with their own blood type.

  • Community bias: The MEBO group may naturally include more individuals with type O blood due to the relevance of this blood type to specific conditions of interest.

Despite these limitations, we note that the analysis from five years ago was less subject to such biases. The main bias in the earlier study stemmed from the population’s shared interest in microbiome research and their awareness of their own blood types. Interestingly, many individuals at the time were not aware of their blood type, which reduced the likelihood of response bias.

While the Facebook poll results may be skewed due to the method of data collection, cross-validation with our previous study lends support to the observed patterns. This reinforces the reliability of our inferences regarding the blood type distribution within the MEBO community. 

Recently, a PATM sufferer from our community shared his hypothesis that agglutinogens can "bind" or interact with volatile compounds, similar to how certain molecules can interact with odorants. Agglutinogens are antigens (molecules that can trigger an immune response) found on the surface of red blood cells. The most well-known are the ABO and Rh antigens.

ABO Blood Groups: The ABO system is based on the presence or absence of A and B antigens. People can be:

Type A: Have A antigens

Type B: Have B antigens

Type AB: Have both A and B antigens

Type O: Have neither A nor B antigens

Rh Factor: The Rh system is based on the presence or absence of the Rh antigen (also known as the D antigen). People are either Rh-positive (have the D antigen) or Rh-negative (do not have the D antigen).

The relationship between olfactory processes and blood types (and Rh factors) might be indirect but stems from the following ideas. Blood type antigens (A, B, AB, O) are glycoproteins or glycolipids, which are surface molecules that interact with other molecules. In a similar way, odorant binding proteins (OBPs) and mucus components in the olfactory system are proteins or glycoproteins that interact with odor molecules. Some studies suggest that genetic variations in blood group antigens might correlate with differences in odor perception or sensitivity. For instance, certain blood types might be associated with varying levels of glycoproteins or mucus composition, which could affect odor molecule binding and transport. The Rhesus factor (Rh) is another antigen on red blood cells and can influence immune responses.

Association between odor and blood types is likely due to other variations in our genetics responsible for attracting certain types of gut and skin microbes. For example, the ABCC11 gene, which is associated with blood type, has been linked to underarm odor production. The A allele (dry earwax, less body odor) is far more common in East Asia associated with highest frequences of B group and lowest frequences of negative rhesus, while the G allele (wet earwax, stronger body odor) is more common in other populations (such as European and African). 

Other gene variants predisposing to odors are over and underrepresented in people with other blood types. 

We will continue to explore these intriguing patterns as part of our ongoing research.



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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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