Monday, December 28, 2009

2009 : reflecting on another year of international body odor and halitosis

Another year draws to an end, and so a look back at the year in terms of body odor and halitosis seems appropriate. On the minus side, perhaps the 'big breakthrough' in terms of body odor research or awareness did not happen, but nonetheless small and significant 'baby steps' were made. This is a quick summary of the year in terms of body odor and halitosis :

This blog and MeBO Research:
The blog reached it's first anniversary in July, and now has been here for the community for 18 months. Aiming to be a platform on the internet so that anyone can find it, whether sufferers or researchers. It included interviews with Nigel Manning (UK TMAU tester), Mark Howard (Biolab), and Cass Nelson Dooley (Metametrix).

Founding of MeBO Research : MeBO Research also came into being as a company in February, with the aim of becoming a charity that stimulates or promotes research into systemic body odors and halitosis, as well as raising awareness of these problems. Research/patient advocacy/campaigner rolled into one. The website started in July and already is having some impact. With the help of Biolab Medical Unit in London, a small study got underway testing 4 areas of gut dysbiosis in body odor and halitosis sufferers who were willing to pay their own costs. Currently 4 results have been received, with 1 more due in the next week or two. Another 2 are interested in testing. The study has a provisional target of 20 testers and then will move on to another area of testing, such as the detox system or metabolism etc.

Community progress :
Bodyodorsupport.com : The closing of the old MSN forum which had served as an accidental online home for those with body odor since the start of the internet would have normally created a vacuum in the group. However thanks to Arun and a number of other helpers, the body odor community got it's own permanent 'home' on the internet in the form of the privately owned Bodyodorsupport.com forum in January. Already there are over 1,500 members.

Australia Treimthylaminuria Foundation & TMAUcure forum: The Australian Trimethylaminuria Foundation, founded by Rob Brown, came to fruition and began it's Yahoo TMAu forum. The ATF is closely associated with Dr Christodoulou's TMAU research proposal, however funding is still to be found. They also started a TMAU store where people can buy all sorts of things and the ATF will get a small % of the sales.

TMAU.org.uk: 2009 also saw the beginning of odor websites elswhere on the net. A mention goes to bigverns TMAU.org.co.uk website and forum, which provides a resource for British TMAU sufferers. The website had a number of scoops including an interview with Dr Robin Lachmann, and was contacted by media outlets.

Meetups : The annual September and Christmas London body odor and halitosis Meetups, with around 20 attending the Thames Festival meetup this year. There was also a meetup in Chicago and Los Angeles.

rrr-tmau.org : Cheryl Marshall appeared on an episode of Mystery Diagnosis in March, about her TMAU story. Cheryl, along with a few sufferers, then arranged a website to help raise funds for the NORD TMAU Fund, with a few people pledging to donate $1K over the year.

Official Research :
Sadly there didn't seem to be any official research this year, demonstrating to the community how they are on their own and need to make change happen. There was a proposal by Dr John Christodoulou and the ATF in Australia, but funds still need to be found for this. MeBO did start it's small study into various areas of gut dysbiosis, and hopes to investigate other areas in the future, such as detox enyzme function and other markers.

Overall it was not a big year for progress in body odor and halitosis research and awareness, but steps were made and the community is learning how to empower themselves especially through the potential of the internet.




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Regular FREE (long distance call plan) General and Women-only Phone Conferences

USA : (712) 432 1620
access code : 391629#
NON USA : add 001 prefix
General Conferences: normally every other Sunday at 2pm EDT.
Next call : Sunday February 21th : 2pm EDT

Scroll down for next Women's conference
Women's Conferences: normally every other Thursday 8.30pm EDT. Next call: October 29th at 8:30p.m. EDT


Arranged by the leaders of the bodyodorsupport.com forum

Note: can also be used anytime for unscheduled group chats

Free USA-based phone conferences (if you have a long distance call plan. Otherwise you will be charged as a long-distance call)

For USA-based : (712) 432 1620 then type the access code on your phone keypad: 391629#
Non USA : prefix above with 001 but check to see if it is free with your supplier


Record number of callers : 70+
If privacy is a concern, code your phone to PRIVATE mode
This phoneline can be used anytime to talk to other sufferers
You don't need to talk. You can just listen

Meet-up/Support group contacts

UK : Arun Nagrath: arunnagrath@hotmail.com
Miami : Maria: mpdela1@gmail.com

Action plans

Write an essay on your odor problem for Richards anthology project
contact your Senator about blood-borne BO/halitosis
write to 'the Doctors' TV show
contact the DrHoffman show on WOR710
tell the Office of Rare Diseases about your problem
try the asparagus urine test
Fecal Body Odor Volunteer for media appearances ?
Politicians ?
Ask an expert if they will put up a Q&A section on their websites like Emory have

suggestions

Thinktank

Bluesky ideas to promote thought:

PTC124(Ataluren, or similar) for primary TMAU due to nonsense mutations
Genetically modified probiotics enriched with FMO3 ?
Trimethylamine strip test paper for daily urine testing? (possibly used in the fish industry ?)
BO&Halitosis research center
BO&Halitosis research fund
Can FMO enzyme be induced in a helpful manner ?
Ask an expert if they will put up a Q&A section on their websites like Emory have
BO&Halitosis 'rehab' retreat (?)
TMAU cookbook/advice book
Employ an expert to do the most thorough choline list
Employ Body odor/halitosis expert(s) (?)
Encourage breath-analysis manufacturers to make portable handy analyzers for metabolic odor problems
TMA urine dipstick test
Is trimethylamine an FMO3 inhibitor ?
Campaign : add TMAU to the newborn screening program
Orphan drug program

Send in your ideas or post them on the forums: Contact experts