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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

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 Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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

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MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Tuesday, December 10, 2019

London 14 Dec : TMAU Winter Wonderland Meetup

Meetup London Saturday 14 Dec
4pm
Marble Arch
Visit Winter Wonderland (free) 

Karen from MEBO UK is again organizing a winter meetup in London.
She also tells of a survey for Genetic Alliance UK (closes 8 Dec)

MEET UNDER MARBLE ARCH, OXFORD STREET, LONDON AT 4pm
OR CALL 07505 590972 IF LATE
REMEMBER meet up on Saturday 14th December at Marble Arch 4pm. Entrance to Winter Wonderland is free!

**********

Also ...
Genetic Alliance UK Survey

TMAU and MEBO UK are registered with Genetic Alliance UK.
If anyone would like to do this survey, it could help raise awareness

Hello

My name is Amy Simpson and I am a researcher at Genetic Alliance UK. You may have heard about 'CONCORD' - an NIHR-funded research study about coordinated care for rare conditions, which we are undertaking in collaboration with University College London. A key aim of the study is to find out how care is currently coordinated for those with rare conditions and how it should be coordinated in the future. This is an important piece of work, which we hope will provide valuable evidence to inform future policy.

If your organisation represents families affected by rare conditions, it would be great if you could share this information with your networks, to encourage them to take part. We need as many patients, carers and healthcare professionals as possible to share their experiences and views by completing our online national survey (bit.ly/CONCORDsurvey). They must be 18 or over to complete the survey. If they are under 18, a parent or carer can complete on their behalf.

The survey closes on Sunday 8th December.

You can read more about the survey and study here (https://www.geneticalliance.org.uk/news-event/have-your-say-on-care-coordination/). You can also download a social media toolkit from the webpage, which includes suggested social media posts, infographics, hashtags and key information to share with your community.

If you have any questions, please do not hesitate to contact me directly.

Thanks in advance for your support with this important work

Amy

--

Dr Amy Simpson | Senior Researcher
Genetic Alliance UK, CAN Mezzanine, 49-51 East Road, London, N1 6AH
T: +44(0)20 7831 0883

Karen's metbo relaxing workout

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A EURORDIS and NORD Member Organization

Tuesday, December 3, 2019

3 cases (2 'cured') of TMAU due to portosystemic shunt (Madrid)

Keywords/concepts
Congenital Portosystemic Shunt (a 'liver shunt').
A bypass of the liver by the body's circulatory system.
Example : a vein forms between intestine artery and systemic artery.
Common in dogs and cats.
In humans ? (unknown). Is it regardless mostly harmless and not detected ?
Madrid Hospital, 2019.

CPSS and TMAU ?
A Madrid Hospital took a look at 15 cases of CPSS in humans. 
3 of them said they have TMAU.
After surgery to solve the CPSS (presumably cutting the rogue vein), 2 of them were pronounced 'cured' of TMAU.

How common might CPSS type TMAU be ?
Nobody knows.
Maybe little is known of CPSS in humans ?
One paper from a long time ago mentioned a baby with a Portal Shunt that's only problem was TMAU. Perhaps this inspired the researchers in this case.

It's another avenue for the TMAU community to discuss and explore, the concept of a Portal Shunt causing TMAU, which could be 'cured' (?) by surgery.   

Full paper : Link

This study aimed to report three new cases of an association between two rare conditions, congenital portosystemic shunts (CPSS) and trimethylaminuria (TMAU), and the efficacy of endovascular closure of the CPSS for resolving TMAU. Between November 2014 and April 2017, 15 patients with CPSS were enrolled in this prospective study to assess the efficacy of percutaneous endovascular shunt closure. Three patients presented with clinical symptoms of TMAU that were confirmed by urine analysis of trimethylamine (TMA) and TMA n-oxide. One year after endovascular closure of the congenital portosystemic shunt, the same parameters were evaluated were obtained and the values were compared to the pretreatment values. The results indicated the disappearance of clinical symptoms of TMAU and normalization of the urine test parameters in two patients and no changes in one patient, who developed new portosystemic communications.

General links :
Wikipedia PSS
Radiology : CPSS
Pubmed : 1 case in 1997

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A EURORDIS and NORD Member Organization

Thursday, November 28, 2019

reply from CRISPR expert about FMO3

Innovative Genomics Institute was founded by Professor Jennifer Doudna, co-creator of the CRISPR method of gene therapy.

FMO3 and CRISPR
A reply was kindly sent by their communications dept about CRISPR in relation to FMO3 gene.
Here is the (abridged) reply :
Dr. Doudna and the Innovative Genomics Institute team appreciate your note. CRISPR genome editing technology is rapidly advancing, but there are still many hurdles to overcome in order to make it safe and effective for a range of genetic diseases. In the case of FMO3 genetic mutations, specific hurdles including the delivery of the CRISPR molecules to the correct cell types, remain difficult. The FMO3 gene appears to be too large to fit into an AAV for delivery into cells via a gene therapy approach, thus genome editing may be the better genetic approach.
It is important to note that it may be years until any genome editing approach to treating FMO3 mutations may be available.
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A EURORDIS and NORD Member Organization