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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

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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
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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
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UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

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)

Tuesday, October 20, 2015

Possible hospital-led TMAU support group in Dublin

It looks like Dr Eileen Treacy may be setting up a TMAU support group in Ireland, based at the Dublin Hospital she works at. Dr Treacy has a long history of being interested in TMAU.

A forum poster posted about this potential support group in Dublin on the TMAU.org.uk forum today
Forum post about Dublin TMAU support group

This would be the first known TMAU support group arranged by healthcare workers and would be a much welcome thing at all hospitals (as few as there are) who help TMAU patients.    

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3 comments:

Anonymous said...

The Queen Elizabeth Hospital in Birmingham (UK) has an Inherited Metabolic Disorders department that sees TMAU patients, and when I went to my last appointment a month or so ago, the consultant said that a psychologist would be joining them in the new year and s/he would start a support group that I could then attend.

If anyone lives near Birmingham, it's worth asking your G.P to refer you if you have TMAU as they do the urine tests, and while there is nothing they can do, other than give the general advice that is out in the public domain, they can check in with you periodically and I guess it raises the profile that there are more people. There is also a specialist nurse, pharmacist and dietician as part of the consultation appointments, so worth going for sure if you have TMAU and can get a G.P to refer you.

Oct 20, 2015, 2:59:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

Thank you very much for this information. Is it alright if I write a post about this, so that others might find this information more quickly?

Oct 20, 2015, 3:30:00 PM
Anonymous said...

Hi Maria,

Yes of course, please do. The consultant Endocrinologist at the Queen Elizabeth is Dr Tarekegn Hiwot in the Inherited Metabolic Disorders Outpatients Clinic, Queen Elizabeth Hospital, Birmingham, B15 2WB.

It would be useful if people who have the condition are referred if eligible by location as it will raise the profile and legitimise how people are feeling, as well as allow testing. Urine tests are sent to the Sheffield Hospital by the Queen Elizabeth.

Regards

Oct 24, 2015, 3:43:00 PM
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