Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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

Scroll down and select country
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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

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
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Blog Archive

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Wednesday, July 14, 2021

UK TMAU Test Stats 2017-2021 : Activist uses FOI act

A TMAU Activist used the UK Freedom of Information Act to ask Sheffield Children's Hospital the number of TMAU tests done using the new method, and how many were positive.

It took months for SCH to reply but finally they did.

The results are  (using the new TMAU test method)
Feb 2017 : May 2021
samples tested : 1757
tested positive : 212 (12%)

That would suggest say 440 tests a year, with 50 positives.

Nigel's old TMAU Test method 2010 gave results (roughly) :
samples : 600
positive : 200 (33%) 


SCH say the new method is superior and the old method may have been subject to contamination.
Some community members feel Nigel's test gave a better reflection of the community, and so was the better test. Maybe if it was contaminated, it was GOOD contamination !! (i.e. spotting FMO3 cases better).  

Nigel's test had many tmau2 cases (majority), whereas the new test has 0.
This 0 is in line with the few other international TMAU test labs who also have 0 tmau2 cases.
The fact there are no tmau2 cases ever seems unrealistic, making Nigel's old test seem the more realistic test.
Even the old MEBO TMAU test (no longer available) had tmau2s.

Despite the new SCH being as 'strict' as the other few test labs, there are still positives.
212 is 12%. 
A theory is the new method no longer spots tmau2s or 'milds', and so maybe the positives are on the more severe side. The theory is the TMAU test labs only spot severe cases now (and misses the majority, the milds and tmau2s).

At least with positives still being spotted, it seems likely the test will continue to be available despite now being a legacy test in the lab, and probably a bit of a nuisance to them. Certainly the least important test.

NHS Best Policy suggestion : Publish rare disorder test results every 6 months.

UK TMAU test results : 1998 - 2009

UK TMAU test results 1998 - 2011 

 

get New Posts by EMAIL : Enter your email address :


A EURORDIS and NORD Member Organization

Wednesday, July 7, 2021

Kelly on the Elaine show (Ireland)


Kelly is a leading TMAU awareness activist. Her TMAU video for 'Truly' has 8.2 million views (and Facebook probably more views).
Today she appeared on Irish TV show 'The Elaine Show'.
Thanks to Kelly for getting TMAU through to the public again.  

get New Posts by EMAIL : Enter your email address :


A EURORDIS and NORD Member Organization

Saturday, July 3, 2021

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

MEBO COVID-19 Back-to-Normal

EARLY RESULTS
July 2, 2021
Clinical Trial #NCT04832932
PROTOCOL #20210103MEBO

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…
https://www.medrxiv.org/content/10.1101/2021.06.28.21256779v1
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.

THE MEBO COMMUNITY AND COVID-19 INFECTIONS


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

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.meboafrica.org
www.meboresearch.co.uk
MEBO's Blog (English)
El Blog de MEBO (español)


A EURORDIS and NORD Member Organization