Academic research project - bringing BB into my day-job!

[brightonguy]

I’ve documented my story in various posts on this forum. One day soon I will pull all these posts together so that all the details of my *journey* are in one post. I am unusually fired-up today following a long consultation yesterday at a Dental Hospital in London where they would not entertain the idea I had BB. The extent of their denial was unbelievable e.g. I told them I get comments and bad reactions very nearly every day and very nearly off everybody I come into contact with and they turned this into, “Well, someone told you once you had BB and now you’re just very sensitive to it”.

I’m an academic at a UK University, I teach statistics and research methods so, like many of you on here, it didn’t take me long to lament the state of the academic literature on BB. You also don’t need me to tell you that there are various BLACK HOLES in bad breath research and policy that need to be filled: (1) It’s not classed as a health condition, so limited money for research despite that fact that it is more debilitating than many health conditions; (2) Worse still, the medical profession seems inclined to offer WRONG advice rather than admit their ignorance – why is it okay to tell us that we’re imagining things so that we then have the added worry of mental health issues on top of BB?; (3) Why is it okay for people to look down on us because of this condition? How many other physical ailments can you think of that engender such frequent bad reactions from so many people? Yes, a small subset of people will laugh at those in wheelchairs but most would never do such a thing. Because BB is not a health condition there are no information awareness campaigns, no teachers in schools telling kids why it’s not okay to admonish people because they smell etc. Why? Because the assumption is that if you smell, you should go and clean your teeth!

Like many of you on here I am highly aware that I know much more about this subject than most of the medical professionals I’ve come into contact with. I don’t know everything and am in awe of some people on this forum who are brilliant shrines of knowledge on the subject. Anyway, my current plan is to turn this *thing* into a research project of some sort with the overall aim of raising awareness of these BLACK HOLES. The method for this would be a web based survey of BB sufferers and the audience would be researchers and policy makers. I’m not a medic, I’m not going to find a cure for this but I might be able to do a small bit in terms of getting sufferers views and opinions on what’s lacking and what’s required from a health and education policy point of view off this forum and into a wider arena. First things first, I need to have a full and frank conversation with some people at work. Actually, first things first I need to get through teaching the new cohort of postgrads tomorrow for two hours without cracking under the pressure of how badly I smell / they notice how I smell.

[mike987]

Awesome, let me know how things are going. I agree with you, and if you've got the fire for it, make it happen!!

[Phantasist]

Brightonguy,
You are absolutely correct about what you're saying. Bad breath is not considered a health issue, but merely bad oral hygiene. People who do not have bad breath do not understand this problem. Dentists and doctors have absolutely no idea about how to stop bad breath. They know that they can't help you, but are reluctant to admit it, so it's easier for them to just tell you it's all in your head. Many of us in this forum have been through this deception.
But, having said all of that, the fact is that breath odor is a tremendously complicated problem because there are so many different possible causes for it. Everything from sinus infections, impacted teeth, tonsils, periodontal disease, yeast infections, heliobactor pylori to lung problems and overgrowth of the wrong bacteria in the intestines! Yes, many of us have too much anaerobic bacteria in our mouths. Doctors know that, but they don't know why. Is there something wrong with the saliva that is supposed to have antibacterial components in it? Who knows? The microbiologists have been working on that, but even they don't know everything. Just look at the paper called "Oral Microbial Ecology and the Role of Salivary Immunoglobulin A". It is unbelievably complicated!
So while I agree with your sentiments wholeheartedly, I think it will be almost impossible to get the medical community to give us the answer, the socalled "magic bullet". The "black holes" that need to be filled in would take a tremendous amount of research by very smart people and who is going to spend a lot of money to do this? I feel very pessimistic about this, and I'm afraid the answer will come too late for many of us.

[thomasthomas]

Brightonguy: I have to tell you. It is ****ing amazing. You have b***s and your courage must be recognized! This proactive and whole thinking attitude is the f***ing deal! I don't want to be pessimistic but you may have some procrastination and rationalizations moments, I will remind you your commitment and WHY you do that. And most of all, If I can help you in some way, I will do it.

My personal commitment is to not let my life pass away because of denial of doctors, or because of fear of mocking.

[thomasthomas]

Addendum,

Phantasist: I partially agree, while it is quite complex, it is peanuts compared to genoma study or stuff like theoritical physics, etc...
I don't want to talk in the name of brightonguy but his attitude seems more about giving awareness and showing in a rigorous way that there is a gap between "it's in your head" and "we don't know where/how to search/cure".
Remind that you talk in your perspective: you are not microbiologist or doctor, so obviously it adds multiples layers of complexity. The strength of an action is to know where the level of complexity can be fragmented and taken into more "eatable" and analyzable parts.
You can be assured that smart people far beyond our cognitive abilities live on this planet, they even have chosen microbiology or whatever...
Our challenge is to put into contact different fields and create a synergistic movement.
You touch an important but solvable (i'm not sure about the word, i want to express the idea of, it's difficult but you can find a solution) problem of money. I repeat myself but you should check at orphan diseases organization, they collect money, and as i know, there are much much more bb sufferers in the world than rare genetic diseases sufferers. Internet allows tremendously the emergence of that actions. Never underestimate the power of a buzz, public relations, and logical faith (kind of paradoxical statement:) )

[brightonguy]

Thanks for this input guys, some really wise and encouraging words here. I will respond more fully in the next day or so.

Bed time for me now.... Peace

[Music Lady]

Looking forward to hearing more about how you propose getting researchers to listen to us...

[halitosisux]

Me too. Loved reading that post brightonguy.

[hopelessone]

me too.

[brightonguy]

I appreciate that BB is caused by different things in different people and that there may well not be a magic bullet that can help all sufferers across Types 1-4. However the pace we move towards helping people regardless of their cause is not going to improve unless this starts to get taken seriously. To get it taken seriously we need to provide an academic forum for sufferers views. So, like I said, I’m personally not going to find a cure but there’s a chance I can do a small bit to provide a stimulus for this by raising awareness that: (1) there’s a community of people who fall between the gap of what current dental and healthcare has to offer; (2) the public, many health care professionals and policy makers are just not aware that this community exists; (3) because of ignorance of this community it is socially acceptable to equate bad breath with bad hygiene and SUBORDINATE BB sufferers by constantly giving them little hints that they **need to clean their teeth**.

How will we get researchers to listen? Researchers listen to (i.e. cite) good quality research published in the peer-reviewed literature. The criteria for good quality research are things such as novelty and significance of the research questions and rigour of the methods employed. As we know and as I’ve already stated there are glaring black holes (i.e. novelty and significance) that need to be addressed. The best way to bring these black holes to the attention of the wider world is to show that there is a community of sufferers with shared views on the subject and the best way to do that is to document views via a survey. The degree of agreement from different people on this forum on issues such as the (to put it politely) disarray of the medical community already stands out for me – that’s the kind of thing that needs to hammered home in an academic forum.

However, it’s also policy makers that really need to listen – they hold the purse and policy strings. Like researchers, policy makers listen to (or are at least amenable to) good quality research. The rubric of evidence based policy may be imperfectly applied but they do still listen at times.

The incumbent medical and dental community also need to listen to change the way they approach sufferers. They might not listen to us as individuals but they will be more amenable to good quality research which synthesises sufferers views. You go armed with a peer-reviewed article in a respected journal which basically says what you’re saying but multiplied by X number of different sufferers and you might at least get your doctor to stop telling you that you need to see a psychiatrist.

Now I’m clearly not an impartial observer and mere collator of data, I’m a sufferer and an active member of this forum who expresses strong views on the subject - that raises methodological challenges but they’re not insurmountable.

On an upbeat note guys... I managed to put on my best poker face and be a pretty darn good teacher this afternoon despite the fact that I did not smell like roses and I think that was pretty clear to those in (at least) the front row!

[hopelessone]

i so appreciater yer spirit in yer last paragraph, brightonguy....

Keep on keepin' on!

[brightonguy]

@hope, thanks, appreciate that, gotta keep strong guys. If folk can't rise above their base biological instincts which tell them that SMELL BAD = BAD then we have to rise above that right? Right!

[hopelessone]

you have a point there. Psychologically, that's a healthier direction than sinking in shame and guilt or whatever else might pound away at our already ailing psyche.

i was almost tempted at work tonight to say to the first person who was coughing/sputtering that "it's all in their imagination" and continue working, cool as a cucumber bwaaahaahaaaa

[malory]

(2) Worse still, the medical profession seems inclined to offer WRONG advice rather than admit their ignorance – why is it okay to tell us that we’re imagining things so that we then have the added worry of mental health issues on top of BB?;

I agree totally with your post Brightonguy. It was a pleasure to read about what you're aiming for.

Please let me know which dental hospital you went to as I was told by Fresh Breath Centre in Devonshire Rd, London that I didn't have bb. Since then a Dutch dentist in Amsterdam has been the only practitioner to have the 'courage' to tell me I did have halitosis and, strangely enough, I am indebted to her as I was thinking that I must be going mad.

It's also VERY true what you said about awareness. London (and most of UK) are aware of political correctness in most areas of life. Most people know that it is wrong to mock those with special needs or disabilities. At school we teach the foundations for this through PSHCE (Personal Social Health/Citizenship). Halitosis is part of the PSHE programme/curriculum for year 3s (age in that it is used as a deterrent to not brushing your teeth properly! So, in school the idea of halitosis being caused by poor oral hygiene is actually reinforced!!

[brightonguy]

I was told by Fresh Breath Centre in Devonshire Rd, London that I didn't have bb. Since then a Dutch dentist in Amsterdam has been the only practitioner to have the 'courage' to tell me I did have halitosis and, strangely enough, I am indebted to her as I was thinking that I must be going mad.

I know we're in danger of going off topic here but I cannot imagine that Philip Stemmer at the Fresh Breath Centre would tell you you didn't have bad breath if you didn't! What did you score on the halimeter? Perhaps this is a sign that you don't have a chronic problem at least. Who was this Dutch dentist? Did they offer you any treatment options? Would you recommend that dentist to fellow sufferers who are desperately searching for someone who knows about this problem?