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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

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

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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
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect

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Blog Archive

Tuesday, February 12, 2019

2 UK Gov replies about TMAU to 2 MP's

2 UK residents wrote their MPs to ask them about TMAU.
Both MPs wrote questions to the Health Minister.

Here are the replies :

5feb19
To ask the Secretary of State for Health and Social Care, what steps the Government is taking to address the need for research into Trimethylaminuria; and if he will make a statement.

Reply :
Caroline Dinenage Minister of State (Department of Health and Social Care)

The Government supports research into common and rare diseases through the Department funded National Institute for Health Research (NIHR) in England. The NIHR welcomes funding applications for research into any aspect of human health, including Trimethylaminuria. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

The Government also supports research into rare diseases through the Medical Research Council, funded by the Department for Business, Energy and Industrial Strategy.

Full info


6feb19
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of funding for research into methods for (a) treating and (b) curing Trimethylaminuria.

Reply :
Caroline Dinenage Minister of State (Department of Health and Social Care)

The Government supports research into common and rare diseases through the Department funded National Institute for Health Research (NIHR) in England. In 2017/18 the NIHR funded one research study into the trimethylaminuria disease which took place at the NIHR Guy’s and St Thomas’ Biomedical Research Centre and NIHR Guy’s and St Thomas’ Clinical Research Facility. The study investigated the feasibility of a novel assessment tool to measure the treatment efficacy in patients suffering from Trimethylaminuria. The study ran for nine months and finished in February 2018.

The Government also supports research into rare diseases through the Medical Research Council (MRC), funded by the Department for Business, Energy and Industrial Strategy. An MRC award of £361,000 from 2013 to 2016 supported researchers at University College London in testing a new therapy to be used for the treatment of trimethylaminuria. Further information on the project, including publications outlining the results can be found at the following link:

https://gtr.ukri.org/projects?ref=MR%2FK015494%2F1

Rare diseases patients also benefit from the pioneering research under the 100,000 Genomes Project. As of October 2018, over 3,000 researchers in 387 United Kingdom and international institutions were part of Genomics England’s Clinical Interpretation Partnership, which have been set up to improve understanding of genomic medicine and its application to healthcare; improve understanding of diseases; and lead the way to developing new diagnostics and treatments.

Full Info


Write Politicians about TMAU
Writing to Politicians is a major way to influence change to TMAU in the Health System
Politicans put pressure on the Government and Health agencies to affect change. Without that it is unlikely there will be any progress for TMAU or Metabolic Malodor Syndromes.

A suggestion would be to write your representative about TMAU.
They will probably send a question to the Health Dept Head.
A great way to get TMAU on the radar at the top.

Petitions

UK : Ask UK Residents to sign the UK Petition
Petition to Gov about TMAU 

International TMAU Petition
Change.org TMAU Petition

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A EURORDIS and NORD Member Organization

1 comments:

Anonymous said...

Article on BBC that may interest the community;-

Wendy Dahl, assistant professor in of food science and human nutrition at the University of Florida, has found that a high-protein diet containing red meat is associated with increased production of TMAO, a metabolite associated with heart disease that is produced by gut microbes and absorbed into the body. Some studies have found that people who consume a vegan diet have lower levels of TMAO.

http://www.bbc.com/future/story/20190228-should-you-go-vegan-for-the-sake-of-your-guts

Mar 1, 2019, 8:13:00 AM
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