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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
rareconnect.org TMAU

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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)

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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