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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)

Friday, June 6, 2008

1972 Dobson 'fecal body odor' reply to which Rosebury later commented on (part 3 of 3)

this is a continuation of the Rosebury 'fecal body odor' paper mystery

So Rosebury was a skeptic. Dobson on the other hand, seems to have taken the reported case at its word, but sadly for us, probably coming up with the wrong conclusion in believing that it was a skin condition.

It seems to have been a question and answer section in JAMA, to which Dobson was the answerer. The question was sent in by Dr Eugene T Baldridge of Pasadena about one of his patients, a "55-year-old man who is in good health has been troubled intermittently for several months at a time by an intense body odor which he describes as fecal in character". The problem seemed to have started 10 years earlier (at age 45). The patient had no obvious 'malabsorption disorder', but claimed to respond well to lincomycin hydrochloride monohydrate (Lincocin) one time for a respiratory infection, the 'odor' becoming less noticeable (or so he thought).

Dobson seems sure of the answer, saying it's 'undoubtedly due to the decomposition by bacteria of keratin, sebum, apocrine gland secretion, or a combination of these.' He reckons the response to the antibiotic confirms this. His suggestions are:
1. twice daily wash with an antibacterial soap
2. use an antiperspirant-deodorant to the axillie
3 after bathing, the axillae, groin and intergenital area should be dusted liberally with triacetin (Enzactin) powder;

and if that doesn’t work after 2 or 3 weeks, he suggests 'tetracycline hydrochloride, 250 mg twice a day, for one month. A maintenance dosage of tetracycline hydrochloride, 250 mg once or twice daily may be required indefinitely.'

Richard L. Dobson, MD
State University of New York
School of Medicine
Buffalo
1972

Dobson went on to found the dermatology dept at M.U.S.C in Charleston.

Knowing what we do now about bloodborne odors, we could perhaps think it unlikely to have been a skin condition, but ironically he may have been in the right area with the antibiotics (if it had an effect on a mild gut infection ?). It's worth noting in these letters that the patient was possibly the first reported case of what we know today as 'fecal body odor' and he probably would have been discouraged from testing for TMAU had he asked for advice today, being too old when it developed.

So that is the pubmed mystery solved, and as usual it muddies the waters rather than shining any light on this problem. Perhaps the main point is, 35 years later we still don't know what the problem is, and the medical community still doesn’t know it exists.

Please note: in no way is this treatment recommended or expected to work. It is posted only out of historical interest.

related posts (this is part 3 of 3)

part 1 : http://mpdela.blogspot.com/2008/06/fecal-body-odor-paper-by-theodor.html
part 2 : http://mpdela.blogspot.com/2008/06/rosebury-1973-letter-in-jama-on-fecal.html

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