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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

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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

London TMAU meeting with Prof Liz Shephard
19th Oct 11am - 1pm
St Mary's Hospital
Praed St, Paddington
London W2 1NY
click to read more
more details : karen.james@meboresearch.org

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

Friday, April 5, 2019

Karen's UK TMAU Disability Campaign

A message from  MEBO's Karen .....

UK DISABILITY DOCUMENT

I have contacted the UK office for disability issues. If anyone else would like to contact the office for disability to request that TMAU etc is explicitly mentioned in the UK guidance notes for disability, that would be great.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/570382/Equality_Act_2010-disability_definition.pdf,

EMAIL CONTACT: office-for-disability-issues@dwp.gsi.gov.uk

The message I sent:

I have read with interest the guidance notes for people with disabilities. The 'Definition of Disability under the Equality Act 2010' is very detailed and mentions several examples of conditions/situations which could be described as disability. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/570382/Equality_Act_2010-disability_definition.pdf I would like to request that you include among the examples the case of Trimethylaminuria and metabolic malodour conditions. Conditions on the metabolic body/breath odour spectrum are becoming increasingly common, and sufferers are frequently discriminated against in the workplace because of their socially alienating symptoms. However, in some cases, reasonable workplace adjustments can be made to accommodate odour sufferers.

Trimethylaminuria (TMAU) is only one of a number of metabolic body and breath malodour conditions and represents the tip of an iceberg. It is highly under-diagnosed (poorly recognised/misunderstood by health professionals and also inadequately tested for). TMAU is not a totally new disease, but, like autism, it has become more prevalent in modern society. The body’s inability to neutralise malodorous gaseous compounds, such as trimethylamine, is absolutely not a hygiene issue. Moreover, malodorous chemicals are actually worsened by the use of perfumes. The smelly gases emitted from the body and bodily fluids, which include fecal, rotten egg, rotten fish and ammonia smells, are overwhelming and repellent, causing nausea and allergic-type reactions in many people. This impedes the sufferer's ability to interact with work colleagues, which, in turn, has a substantial, long-term adverse effect on the sufferer's life and affects all relationships negatively.

I hope that this information can be included in your document as it could assist metabolic body/breath odour sufferers who are at risk of being dismissed or ousted from their jobs. Enabling metabolic malodour sufferers to work with dignity and contribute to the economy would actually reduce government expenditure because sufferers would not be forced to be reliant on state benefits and NHS counselling services. I hope, therefore, you will consider amending the 2010 document.


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A EURORDIS and NORD Member Organization

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