Bad Breath Halitosis Forum

2 PM EST Sunday April 4 2008
Conference Dial-in Number: (712) 432-1620
Participant Access Code: 391629#

Many thanks to Cabel for organising the weekly conference call !! I suspect there were over 50 of us present although only 2-3 can chat at any one time.

This conference call was for members of the Yahoo Trimethylaminuria group and the MSN BodyOdorSupport Group. Why can't we have one just for the BadbreathHalitosis Group also guys? It would be much better than the weekly chats on Sundays since you can talk and listen to people's voices.

What we need is more people like Cabel who exude enthusiasm and a drive to help others. I think the conference calls stand a good chance of bringing members properly together and this is how research starts.

Research is already going on in many countries to better technology for analysing and measuring odours which are present in trace quantities (really difficult). Also research in enzyme analysis (including mutations and conformational changes) is advancing fast so that we will one day soon be able to study and compare population data quickly. In short, very soon, technology will make our conditions more easily researchable.

If we want to do our bit then we should take part in questionnaires which compartmentalize our conditions so that they become homogeneous and hence researchable. This means adopting questionnaires which ask members what symptoms they have, what (if any) diagnosis they have and what they have tried that affects the odour ie makes it better OR WORSE!!).

See the Database link on the left of the Yahoo Trimethylaminuria message board for an example of the type of questionnaire we should try to start with. If somebody helped me I would better this and make it available to all odour-related Groups (regardless of whether they have TMAU or not). The database would be viewable by all, including scientists and researchers.

Without such a database, researchers will think that we have not done our bit to help them and we can not expect their support.

Thanks once again Cabel for all your help. You are a star! Thankyou to other guest speakers and audience for their support.
Arun

Hi Arun,

I agree. Jimi has survey data from this site somewhere. I also have data from this survey (80 or so entries), but didn't compile it as I didn't find the results too exciting... Still, I can compile it if it's any help

Conference call? How do we do it? Skype?

Hi Larc,
We can definitely all work together on the survey. My idea for the survey is to ask the minimum number of questions required to carry out the required research that will assist the research community and us. It is possible we could use your existing survey in some way and seek to better it if possible as it would be a shame to waste all that hard work on everyone's part.

I am in touch with a lady here in London who knows how to set up a conference call. She will let me know soon how it is done and then we can advertise it. It is normally done over the phone using a dial-in number and an access code.

Incidentally, does anybody here already use Skype? If so, can you tell us if it supports conference calls?
Arun

I have bunch of surveys answered on the left side if you click on Surveys

Yeah, I use Skype (rarely), and Yeah, it's good for conference calls

http://www.skype.com/help/guides/makeco ... l_windows/
http://www.skype.com/allfeatures/conferencecall/

Jimi, Larc,
I think we can do something great with voice chats as a Group. One think that was pointed out to me though was that if each site do their own voice chat then we are not all united.

Instead, the weekly Conference chats organised by Cabel from MSN support are not specific to any group so we can all join in! What do you guys think about this? (There are many on these other sites who have both breath and body odor and this may indicate that perhaps we should not just be focussing on the mouth as an origin for our problem!)

Are you guys happy to join the Conference chat (we can check the times on the MSN message board) or should we create our own? What is your opinion?
Arun

Jimi, Lark,
Here is a message I just posted on the Curezone site in request to a request by mpdela that all 4 forums work together on this survey/ questionnaire/ blog/ profile:- (What do you guys think?)

Mpdela,
Firstly, sorry for not replying earlier. I started a new job on Monday after a 4 week holiday and have come home tired each evening and crawled straight into bed!

Wow, you have been reading my posts so earnestly, how flattering! Gosh 25 months! I didn’t realize I had been away so long.

Mpdela, I do like your idea of a Blog and would be happy to provide a scientific input to ensure that our efforts are not in vain. I did create a questionnaire on the Yahoo Trimehylaminuria Group site but think you have the wrong site address. Try the following link instead:-

http://health.groups.yahoo.com/group/Tr ... a/database

As you can see, the questionnaire is in 2 parts. Ideally, I wanted these to be combined into one table but anyway this questionnaire just serves as an example of the type of questions we should be asking. As you can see, not many people bothered to complete the survey.

Also, a guy called Ben has produced a table for Body Odor sufferers on his site. It lists what people have tried and its effect:-

http://health.groups.yahoo.com/group/bo ... Rows&tbl=1

A Group specific to breath odor have also produced a questionnaire/survey for their group and this has been completed already by it’s very diligent members. I think we should draw on their experiences by first talking to Jimi and Larc on the following message board:-

viewtopic.php?t=1202

We may want to expand the input of the blog to badbreathhalitosis.com so that we have 4 groups represented (MSN, Yahoo, Curezone and Badbreathhalitosis). It would be amazing if this combined effort by all the odor groups succeeds in uniting the 4 forums.

What do you think mpdela? Should we consult our brother Groups and ask them if they will work with us to achieve this common goal?
Arun

Scientist, what if I make a similar site than ours just for TMAU

I think it is better for public than having groups

Jimi,
The Trimthylaminuria Group already have their own site(s). Here are just 2 links:-

http://health.groups.yahoo.com/group/Tr ... ssages?o=1

http://curezone.com/forums/f.asp?f=441

As you can see, they are pretty active. Jimi, don't imagine that just because they are members that they all have a diagnosis of TMAO. Most are just lost and curious people with strong fecal breath and/or body odor but with no diagnosis of anything.

I would like to get the badbreathhalitosis site more active.
Perhaps I can join your chat on Sunday? Do people still chat on this site?
Arun