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

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at UK Findacure conf 2020

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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

Saturday, July 3, 2021

EARLY RESULTS: MEBO COVID-19 Back-to-Normal Clinical Trials

MEBO COVID-19 Back-to-Normal

July 2, 2021
Clinical Trial #NCT04832932

EXCERPTS FROM AURAMETRIX, "Viruses and Vaccines"

The research protocol was approved by MEBO Research IRB before it was open to the MEBO community around the world, which states the following reasons this study is being conducted,
COVID-19 vaccines were tested in clinical trials with thousands of participants before authorization, and were administered to over a billion people across the globe in the following 6 months… Vaccinated individuals were also posting their experiences on multiple social media groups created on Facebook, Reddit, Telegram and other platforms, but the groups were often removed as “proliferating false claims”. These forms of reporting are susceptible to biases and misclassifications and do not reach all vaccinated individuals, raising questions about risks of exacerbating health inequalities as well as security and privacy vulnerabilities…
Possible worsening of MEBO/PATM symptoms after vaccinations was reported by 10% of study participants.
Comparing data from the COVID-19 Back-to-Normal Clinical Trial to published data of other studies matching by ages and vaccines, indicate that the short-term effects are very similar. However, as our Principal Investigator, Irene Gabashvili, PhD, tells us in her Aurametrix blog post,
More significant differences were for less common and longer-term effects [after vaccination] including fast heartbeat, dry mouth, skin reactions and swollen lymph nodes…Possible worsening of MEBO/PATM symptoms after vaccinations was reported by 10% of study participants.


Irene’s early results show a significant difference of MEBO group from the general population in the response to COVID-19 infection, and points out how the rate of “long-haulers,” who had long term adverse symptoms after contracting COVID-19, is close to some groups with severe genetic conditions,
Our rate is closer to some groups with severe genetic conditions
The most significant difference of MEBO group from the general population is the response to COVID-19 infection. 6 people (3 males, 3 females) out of 41 study participants experienced COVID-19 and all of them had long-term reactions. 5 out of 6 considered themselves long-haulers. The 6th person reported persistent MEBO/PATM issues post-acute COVID-19. That's 80-100% of long-haulers, ~4 times more than researchers estimate! Our rate is closer to some groups with severe genetic conditions - such as individuals with hypohidrotic ectodermal dysplasia - predisposing to bad smell from nostrils.

Community immunity (also known as herd immunity) protects everyone. We hope that MEBO/PATM community stays COVID-free and safe.

Gold JE et al. Study 2021

In her early results, Irene makes reference to a new study by Gold and his colleagues*, which argues,
...long-haulers might actually be experiencing an attack of fatigue-inducing Epstein-Barr virus (EBV, a member of herpesvirus family HHV-4) that was lying dormant in their bodies…Vaccines were shown to reactivate viruses too, in much rarer cases. As was demonstrated for Pfizer vaccine that woke up another herpes virus, chickenpox herpes-zoster (HHV-3), that causes shingles when reactivated (this happened to 1% of patients with autoimmune inflammatory rheumatic diseases). Herpes simplex (HSV-1) can be also kept in remission by a healthy immune system and can be also reactivated by COVID-19.
Irene raises the following suggestion, “MEBO and PATM symptoms could arise following an infection. Perhaps SARS-CoV-2 can reactivate the old viruses that caused these symptoms to begin with?” In fact, many sufferers in the MEBO community around the world have pointed out countless times that their difficult-to-control, long-term odor condition was originally triggered following a course of antibiotics for a serious infection. *Gold JE, Okyay RA, Licht WE, Hurley DJ. Investigation of Long COVID Prevalence and Its Relationship to Epstein-Barr Virus Reactivation. Pathogens. 2021 Jun;10(6):763.

The MEBO community around the world profoundly appreciates Irene's dedication of over a decade to seeking answers to the various odor & PATM conditions of our members.


María de la Torre
Founder and Executive Director

A Public Charity
MEBO's Blog (English)
El Blog de MEBO (español)

A EURORDIS and NORD Member Organization


Unknown said...

Que bueno que a Sido de ayuda la información . Pero debería de informarse más los resultados porque no sabemos bien los de la comunidad si va a ayudarnos en nuestra terrible henfermedad.
En espera de su respuesta .
Hasta pronto

Jul 4, 2021, 10:34:00 PM
Maria de la Torre said...

Son nuestras intenciones informar más resultados en las próximas publicaciones de nuestros blogs (Auramentrix y MEBO), teniendo cuidado de no poner en peligro la privacidad de los participantes.

It is our intentions to report more results in future blog posts (Aurametrix & MEBO) taking care not to compromise anyone's privacy.

Jul 5, 2021, 12:23:00 PM
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