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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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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
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NORD Member Organization
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RESEARCH DETAILS

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£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

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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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