Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

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

0 comments:

Post a Comment