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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
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

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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)

Wednesday, September 2, 2009

The UPSIT Test (scratch and sniff odor home test)

Probably the main reason that body and halitosis is still around, and metabolic body odor is not accepted as a medical problem, is because usually the sufferer cannot smell themselves. Most with metabolic body odor would seem likely to be transient, and on a visit to the doctor there's a good chance they do not smell at that time nor know how to 'provoke' smelling. So as far as the medical industry grandees are concerned, there is little evidence of the problem.

Usually fellow sufferers, possibly only of the same type of body odor or halitosis, cannot smell each other either, and possibly it is the case that perhaps a small percentage of non-smelly people can smell sufferers mostly either (for instance, perhaps genetic carriers of a metabolic body odor cannot smell sufferers often). Dr John Cashman estimates that perhaps 8% of the population cannot smell trimethylamine when others can. As examples; perhaps those with 'mild' isovaleric acidemia cannot smell someone else with the same problem, but they can smell someone with trimethylaminuria ... and vice versa.

This 'selective anosmia' does not seem to apply only to metabolic body odors, but to all types of body odor and halitosis. For instance people with 'classic' body odor or 'classic' halitosis (the surface-type odor problems) seem not able to smell themselves. It may also seem likely that in these cases that 'loved ones' cannot smell them either. For instance, perhaps you know someone who is well respected and has a wife and children but has a habit of developing a body odor over a number of days then it disappears (after bathing) and starts again. The question is, can his wife and children smell him ?

In medical terms, the only current explanation would be 'anosmia', where people cannot smell certain smells. The current 'home test' for this would be the University of Pennsylvania Smell Identification Test (known as the UPSIT test). This is basically a 'scratch and sniff' test of 40 odours. The University of Pennsylvania has a smell and taste clinic, seemingly opened by the NIH. Someday perhaps there will be body odor and halitosis research centers and clinics opened by the NIH.

The UPSIT can be purchased from sites such as this for around $50 including everything needed.
Example seller : sensonics.com UPSIT Test

Although it may be an interesting test to do, it's not known if it will provide any clues to the mystery of metabolic body odor and halitosis (or other types).

Note : Unfortunately, although most body odor and halitosis sufferers cannot smell themselves, the anecdotal evidence seems to be that they can smell the smells from other sources other than through the skin. So the 'body odor/halitosis anosmia' does not seem to be as simple as being unable to smell certain smells, period. For instance, most people likely can smell a fish rotting, which presumably means they can smell trimethylamine from that source. There is no current explanation for this 'quirk'. A speculative guess would be that if your bloodstream has a certain level of 'smelly' toxins, then the 'smell receptor bar' is set higher than a normal person.



Other links
University of Pennsylvania Smell & Taste Center

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