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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
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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
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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)

Thursday, June 5, 2008

Rosebury 1973 letter in JAMA, on 'fecal body odor' case by Dobson (part 2 of 3)

JAMA, Mar 5, 1973, Vol 223, No 10
Theodor Rosebury, DDS
Shelburne Falls, Mass

After a trip to the university library and some swift research, the Rosebury 'fecal body odor' paper mystery has been solved, albeit disappointingly. It turns out to be a letter to the editor of a medical journal, in reply to an 'ask the dermatologist' question and answer section that must have been in the journal too. Instead of Professor Rosebury being a visionary in this syndrome, he turns out to be sceptical and critical, and he may be the first promoter of the dreaded 'olfactory reference syndrome' 'threat'.

In reference to Dr. Richard Dobson's reply (222:1654. 1972) to a question on the case of a patient who presents with fecal body odor, Dr. Rosebury calls for substantiation or documentation.

To the Editor...The wording of the question (". . . an intense body odor which he [the patient] describes as fecal. . ." and ". . .lincomycin [treatment for a respiratory infection] seemed to make the body odor less noticeable) leave open a possibility of olfactory hallucination or synesthesia... Yet the answer reads that the "odor is undoubtedly due to decomposition by bacteria or keratin, sebum (or) apocrine gland secretion" and the prescription not only localized the odor with some assurance in the axillae, but recommends such remedies as an antibacterial soap and antiperspirant-deodorant.

Dr. Rosebury, goes on to say that, "This field, being poorly studied and litte understood, is presumably for that reason widely exploited in advertising to the public. Not many bacteria can decompose keratin and those that can are not likely to be present in the axillae; metabolic products of sebum lipids and apocrine sweat are unlikely to have fecal odor. "

It is ironic to note that the conundrum that haunts sufferers today is asked back then by Rosebury, and in this context almost seems sensible : " It is not stated that the odor was perceived by the physician himself or by anyone other than the patient. "

It leads to a 2nd mystery; what did Dr Dobson say to the expert asking the question ? I visited the library again and managed to solve the mystery,which I will post later today.



related post (this is 'part 2')

part 1 : http://mpdela.blogspot.com/2008/06/fecal-body-odor-paper-by-theodor.html
part 3 : http://mpdela.blogspot.com/2008/06/1972-dobson-fecal-body-odor-reply-to.html

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