Chickenpox and Tinnitus ...

[RichL]

The reason there is no cure for tinnitus has nothing to do with "TRT and the such."

Just out of curiosity, @RichL, how many letters have you written so far this year to various members of congress explaining the physical, psychological, social, and economic impact of tinnitus on you personally and on society as a whole, imploring them to fund research towards a cure. If it's ten, then I commend you. If it's any less, then before you blame habituation for the lack of a cure, take a look in a mirror.

Dr. Stephen Nagler

I am not blaming it as such just the attitudes of some medical professionals which I believe is hindering the cause!

Why I would write to the American congress when I am at the arse end of the world in NZ, I wouldn't know, but it's not my frigging job to hurry the medical research company's into finding a cure, I don't get paid a six figure salary so why should I use my valuable time for free?

take a look in a mirror.

Now it's my fault huh?

Rich

 

[Dr. Nagler]

Now it's my fault huh?

Of course it's not your fault. But it's not the fault of the clinical community either. There are just so many research dollars to go around. And the sad truth is that tinnitus is not a particularly "sexy" condition - so the research dollars have been largely going elsewhere. The situation is improving, but there's still a long way to go.

Finger pointing does not help.

Dr. Stephen Nagler

 

[RichL]

Of course it's not your fault. But it's not the fault of the clinical community either. There are just so many research dollars to go around. And the sad truth is that tinnitus is not a particularly "sexy" condition - so the research dollars have been largely going elsewhere. The situation is improving, but there's still a long way to go.

Finger pointing does not help.

Dr. Stephen Nagler

Fare enough, your probably right, bickering about it is not really going to help either. It is very frustrating when you see money being wasted on bullshit that end up being play things for the well off instead of going towards research for a variety of illness, T included!

Regards Rich

 

[attheedgeofscience]

Just out of curiosity, @RichL, how many letters have you written so far this year to various members of congress explaining the physical, psychological, social, and economic impact of tinnitus on you personally and on society as a whole, imploring them to fund research towards a cure. If it's ten, then I commend you. If it's any less, then before you blame habituation for the lack of a cure, take a look in a mirror.

10? Or even one? Irrelevant. It is not the job role of individuals of society to write to members of Congress (as in the case of the US).

The best thing the ATA could have done years ago with its limited budget would have been to adopt a 3-step approach:

• A "containment of disease" approach ie. lobby health officials to spend more money on campaigns and public awareness of the dangers of noise (since prevention, still, is by far the best option...). Instead, money is spent on the public awareness of HIV, obesity, smoking, and drinking. All of them "focus areas" which are relevant of course - but also somewhat "common knowledge" (whereas tinnitus is not). How difficult would it be to make it mandatory to hand out a pair of earplugs at concerts along with the entrance ticket itself? I cannot believe we are now almost 15 years into the 21st century, and health officials have still not adopted such a basic quick-win approach. I happen to work at the European headquarters of a company with a turnover of 50% of Denmark's entire GDP (we count roughly 500,000 employees). When we - at my company - get involved in strategies, we usually pretty carefully consider our alternatives - our "game plans", if you will. A job I have been involved in for almost 20 years (even though I am only 36 years old). I therefore have a pretty good nose for detecting whether people and organizations have a sense of direction. And it is pretty evident to me that health officials, the ATA, doctors, and governments are running around like headless chicken when it comes to implementing any kind of strategy on tinnitus. In fact, they haven't even begun to understand the problem.
• Hire a hardcore lobbyist who could convince the US Congress in seeing the logic of spending an additional one billion dollars now (on research) in return for not having to spend a billion dollars each and every year in the future on disabilities.
• Enlist the help of some of the superstar entertainers (with tinnitus) - there are plenty to choose from since many of them are musicians (eg. Bono from U2). Imagine the effect on funding if people (with tinnitus) like President Bill Clinton, actress Neve Campbell, or Barbra Streisand would do just a single tweet on the closing night of an ATA fundraiser. I believe tweets are a maximum of 140 characters. So it shouldn't be much work...

Instead, the ATA spends its limited money on doing nonsense stuff such as a caffeine study ie. a study to investigate the effects of caffeine on tinnitus. Who the hell cares? No one needs a study in order to tell them whether caffeine spikes their tinnitus or not. Either it does, or it does not. And to find out, all you need to do is drink... a cup of coffee!

No wonder progress is so slow.

 

[valeri]

@attheedgeofscience

Spot on!

Last year, I think it was BTA, asking for donations to do research if meditation is beneficial to people with t!
Seriously???
On the other hand you have William Shattner and that talk show guy David, making jokes about t and making it entertaining for the audience.
So when you have few million people watching the show no wonder where they get the idea that it's really not a big deal, it's just a sound!
Person diagnosed with t these days doesn't get any more help then 50 yrs ago, it's still the same: go home and learn to live with it, nothing can be done.
We've heard it so many times on this board that there is no way somebody can say things changed.
If TRT is the way to go why there isn't but a handful of competent practitioners world wide?
Same with neuromonics, $5000+ for something that never had any clinical studies done or reported!
It's just one big grey area and one needs a looooooooot of money to possibly find some relief or more often none.
I wish I was an influential person like dr Nagler or some celebrities, I would be on every tv channel, on every radio station raising awareness and pushing for cure.
As the saying goes: it's who you know, not what you know!

 

[Dr. Nagler]

It is not the job role of individuals of society to write to members of Congress (as in the case of the US.)

Of course it is. How are your representatives in congress supposed to represent your views on issues important to you if they do not know what those views are?

The best thing the ATA could have done years ago with its limited budget would have been to adopt a 3-step approach:

Have you communicated your ideas to ATA?

Dr. Stephen Nagler

 

[attheedgeofscience]

Of course it is. How are your representatives in congress supposed to represent your views on issues important to you if they do not know what those views are?

Dr. Nagler, they already know:

http://www.ata.org/HR1443

You can find many articles like that. And I am also pretty sure that you know they know...

What is shocking is:

• The astronomical figures involved ie. > $1 billion in tinnitus disabilities (for veterans alone)
• No particular action emerges from these kinds of meetings; instead the politicians merely conclude "Oh, we seem to be having a problem... somewhere... what was that, again? Oh, tinnitus, you said, right?". As I have indicated, I am no novice when dealing with strategies (and large, large financial numbers), and if I were running the show, I would have taken action on that a long, long time ago. In fact, I would not even have called for a hearing. Why would I? I have all the facts in front of me! I don't need a hearing of any kind to tell me what I already know. The critical point is to take action, not to reflect on stuff that is already known. That is why the ATA probably should (have) consider(ed) hiring an assh##e of a lobbyist who can stir things up as needed with the right politicians. Politics is not done in hearings. Politics is done behind the scenes. First you try the "nice way" and - if that doesn't work - then you try the "not-so-nice way".

Have you communicated your ideas to ATA?

I would have. But, the key words in the following phrase from my previous post "The best thing the ATA could have done years ago" is years ago. A cure for tinnitus has already moved from being a pure research topic to being an applied research topic. That means, it has now moved from the academic sector to the business sector. Earlier this year, I tracked down financial statistics and used my financial sources to look for (hidden) clinical trial data in those sources. The outcome of that exercise - which took an entire day - is what you see in the attachment. There are currently some +10 companies pursuing pharmacological approaches to the underdeveloped area of otology therapies. The combined funding of those companies easily exceeds ½ billion dollars. They therefore have the funding they require. And that is why I was using words in the past tense. Because there is no longer a need to influence anything, in my opinion. As I stated in another post in another thread on the ATA: "the novel will now write its own ending".

As for noise level awareness, that is something I will be influencing with EU health officials once I am done with my experimental treatments. I commented on that some time ago in these threads:

https://www.tinnitustalk.com/threads/outdoor-concert-tinnitus.5059/#post-50424
https://www.tinnitustalk.com/threads/outdoor-concert-tinnitus.5059/#post-50509

The reason I will be taking action on hearing loss (and not spefically on tinnitus) is because I deem protection of hearing to be a relevant on-going topic even if a cure for both hearing loss and tinnitus is found.

But first, I need to take care of myself.

 

[Dr. Nagler]

ATEOS, we see things very differently, you and I. If my priority were taking care of myself, I don't think us be spending much time on a message board duking it out with somebody who has succeeded in doing precisely that!

I wish you well in your search for relief.

Dr. Stephen Nagler

 

[Bart]

The way I see it there are alot of diseases the medical world can do nothing about, tinnitus is just one of them in a very long list. Many of those diseases are life threatening.

Although many people have T there is only a minority that really suffers from it ( unfortanatly I am one of them ) , it is not contagious and will not kill you. As Dr Nagler said, there are only so much resources to go around.

I asked my doctor and he said nerve damage is one of the hardest things to treat.

There is no cure (yet), so the best we can hope for is try and get on with our lives the best way we can or be miserable for the rest of our days, TRT has helped alot of people I know to cope, at least we have that, if you know of any other treatment these days with better succes rates I will be glad to know.

Sure sucks to draw this hand in life but we can not turn back time or draw again so I try to get on with my life any way I can, it is what it is.

 

[attheedgeofscience]

ATEOS, we see things very differently, you and I.

I don't know Dr. Nagler. Perhaps we do. But I haven't met you, so I could not really say.

What I do know is that human beings tend to address problems using the skillset they are most comfortable with (not surprisingly, I guess). As someone who has spent my entire career in the world of finance of supersize companies handling "mergers and acquisitions" projects, I tend to view all those projects as opportunities and my job is selecting the best strategy for each one (= best ROI for scenario A, B, C, etc.). Each project is a problem that needs to be solved - usually with tight deadlines - and I keep solving it until it is fixed. Simple as that.

If I were in charge of say the ATA - or involved with the ATA - I would approach the whole (or)deal with the same mindset:

1. What is our ultimate aim - or raison d´être? Provider of knowledge? Helpline for tinnitus sufferers? Clinical trial facilitator? Research entity? Facilitator of funding for research? Provider of funding for research?
2. (Self)-sustainability. Any company has only only goal: to make the largest profit possible. There is no other goal in business. Many (clever) people have tried to come up with alternative definitions of what the ultimate goal of a company is. But, at the end of the day, there is only one goal: to make money! If a company cannot sustain itself, it will die. Now a charity such as the ATA exists not to make a profit, but to be self-sustainable. Therefore identifying funding needs and opportunities is the most important aspect ie. how much money do we need and how are we going to get it? Pretty simple. A brainstorming session will take care of rest. Then execute. Simple.
3. Networking. If I were chairman of the ATA, I would be inviting myself to lunch with the major players within the otology company segment. I'd note down any problems they are having, and asking how I could help (keeping in mind stakeholders ie. tinnitus sufferers, government entities, and the pharmas themselves). I would also remind myself that these meetings are quid pro quo; so I wouldn't show up unless I had something to offer in return...

Running any project/entity/company/charity is a piece of cake provided the person has the right skills, knowledge, mindset, drive, and attitude. As you know, I have met probably around 35-40 doctors over the past year. Many of them professionals in their respective fields. But none of them have the drive to relentlessly persue a (medical) problem. They just don't have it! As an example, very recently, I met with my (new) GP to have a "chat" about potassium modulators - specifically Trobalt and Flupirtine in relation to tinnitus. Trobalt, she had never heard of, and Flupirtine was not something she was aware of could be used in relation to treating tinnitus. No problem - attheedgeofscience had anticipated that minor, ahem... issue - and came prepared with the required documentation. So after a brief chat we started on the Flurpirtine. She then recommended that I come she her again in two weeks time. Guess what - when I showed up again two weeks later, do you think she had done any research on her own in the meantime? Perhaps called a colleague for a suggestion on the continued treatment protocol and duration? Nope... She was just as blank as a patient with fixed and dilated pupils. So again, it was me - the patient - and not my doctor doing the talking. Maybe I should recommend charging her - and not her charging me, the next time. Then I asked if she had any suggestions on how to get into the upcoming AUT00063 phase II trial. Again - no clue from her side. I might as well have asked a random individual on street, instead. No will to explore or go the extra mile for the patient. Just not good enough, Dr. Nagler. Not good enough! Remember, I am the first person in the world to have done two stem cell treatments specifically for tinnitus. I am used to going the extra mile. I expect the same from my doctors, because 1) I pay them, and 2) they should be in a far better position of knowledge than me.

So you bring your skillset. And I bring mine. And I know which skillset I prefer!

If my priority were taking care of myself, I don't think us be spending much time on a message board duking it out with somebody who has succeeded in doing precisely that!

There is a very simple answer to that Dr. Nagler. But, I don't think you want to know what it is.

 

[Jay M]

how many letters have you written so far this year to various members of congress explaining the physical, psychological, social, and economic impact of tinnitus on you personally and on society as a whole, imploring them to fund research towards a cure.

Great idea. Do you think it would be a better idea if you drafted a letter, for everyone to insert their name on, illustrating all the points of this affliction in a manner in which can only be best worded by a Doctor?

 

[xmierce]

Great idea. Do you think it would be a better idea if you drafted a letter, for everyone to insert their name on, illustrating all the points of this affliction in a manner in which can only be best worded by a Doctor?

Jay,

That is a great idea but that type of draft letter should go to the ATA to distribute. They will have a larger impact than this forum alone.. ATA should recruit a spokesperson such as a retired general with political contacts to lobby for additional funding for the cause. If the general has tinnitus is would even go further.. It's like Michael J Fox asking for funding for Parkinson's Disease.

 

[Dr. Nagler]

Great idea. Do you think it would be a better idea if you drafted a letter, for everyone to insert their name on, illustrating all the points of this affliction in a manner in which can only be best worded by a Doctor?

My opinion is that a large series of personal letters relaying personal experiences would be more effective than one letter with a bunch of signatures.

Truth be told, I have been involved in tinnitus advocacy for some fifteen years, and I never cease to be amazed at the overall lack of interest on the part of tinnitus sufferers when it comes to supporting their own cause.

Dr. Stephen Nagler

 

[SoulStation]

Great idea. Do you think it would be a better idea if you drafted a letter, for everyone to insert their name on, illustrating all the points of this affliction in a manner in which can only be best worded by a Doctor?

I agree on writing this letter to congress lets get it done. Anyone know where to start?

 

[Jay M]

My opinion is that a large series of personal letters relaying personal experiences would be more effective than one letter with a bunch of signatures.

Truth be told, I have been involved in tinnitus advocacy for some fifteen years, and I never cease to be amazed at the overall lack of interest on the part of tinnitus sufferers when it comes to supporting their own cause.

Dr. Stephen Nagler

I was generalizing the idea but to be more specific, a generic letter that would contain some specific info that a Doctor such as yourself can write but the any individual such as myself can insert my name on it, add my personal experience to it and email it to the appropriate individuals demanding more action. A sticky thread could be made with instructions and a word doc attached. A simple action solution that every new and current member can and would likely do.

 

[Dr. Nagler]

I am flattered that you would think of me in the above regard, but I would prefer not to participate. I am certain that there are plenty of very knowledgeable individuals on this board who are more than capable.

 

[Mpt]

I have a question for you to ponder.

Chickenpox is, of course, a disease. And whether or not you are consciously aware of the fact that you have chickenpox - if you have chickenpox, then you have chickenpox.

Chickenpox causes a rash. A rash is a physical finding. And whether or not you are consciously aware of the fact that you have a rash - if you have a rash, then you have a rash.

The rash itches. Itching is a symptom. We know that whether or not you are consciously aware of the fact that you have chickenpox - if you have chickenpox, then you have chickenpox. And we know that whether or not you are consciously aware of the fact that you have rash - if you have a rash, then you have a rash.

But how about the itch, the symptom? If you are not consciously aware of the fact that you are itching, do you have an itch?

And what does that say about tinnitus?

Just something to think about.

sp

seriously.....--- I learned a long time ago that arguments made by illustrative comparisons in regards to disimilar situations are usually made when the argument itself lacks substance, bravo ... many plaintiff attorneys would be proud of this ... I never received your critique of my TRT summary- and I would appreciate one, since you insinuated it was lacking.... if not on the forum at least over private message

 

[attheedgeofscience]

There are just so many research dollars to go around. And the sad truth is that tinnitus is not a particularly "sexy" condition - so the research dollars have been largely going elsewhere.

As I mentioned earlier on in another post, Dr. Nagler, we all address the problems we face with our own skill sets.

Here's how I see the situation. It is not about "research dollars". It is about spending money now in order to avoid a cost in the future (or at least that would have been the argument back in the year 2000 or so; now it is irrelevant as drugs are already being developed). Back in 2002, a paper was released on Flupirtine as a treatment method for tinnitus (www.google.com/patents/WO2002015907A1?cl=de). Already back then, there was a certain awareness of potassium modulators and their potential effect on tinnitus. Right now, the combined funding of all otology companies pursuing therapies of the inner ear is at $600M (roughly). Imagine a government that decided to spend twice that amount ie. 1.2 billion dollars (back in 2002). For that kind of money you could have hired the top 100 otology scientists, paid them a 300,000 dollar salary per year for 10 years, and set up a state-of-the-art research facility. Essentially advancing progress by 10 years.

Doing a 10-year financial time series, that would come to an investment of 1,2 billion dollars in year 0 while not having to spend a billion dollars each and every year in the future on disabilities. Assuming a 75% curative rate in the investment scenario, that would amount to 250 million dollars in continued disability expenses (as in the case of the US - for veterans alone).

So here's the math (with a 75% curative rate):

Year "Invest" "Do Nothing"
0 -1.200 0
1 -250 -1.000
2 -250 -1.000
...
10 -250 -1.000
Total -3.700 -10.000

Saving 6.300

And the math (with a only 50% curative rate):

Year "Invest" "Do Nothing"
0 -1.200 0
1 -500 -1.000
2 -500 -1.000
...
10 -500 -1.000
Total -6.200 -10.000

Saving 3.800

Even in the worst case scenario (ie. only 50% curative rate), the US government could still have saved 3,8 billion dollars on tinnitus disabilities by investing 1,2 billion dollars to begin with. So it is not about "research dollars", it is about "common sense", really.

Needless to say, there would be a number of assumptions in any time-series analysis. But it is the basic principle I am trying to convey here. Not the exact figures themselves. And I have been "generous" in my assumptions ie. investing 1,2 billion dollars really is a lot of money (meaning: with that kind of money, scientific breakthroughs really could have been made especially since there was already a concrete lead from the Flupirtine study).

But those opportunties have come and gone.

 

[attheedgeofscience]

I wish I was an influential person like dr Nagler or some celebrities, I would be on every tv channel, on every radio station raising awareness and pushing for cure.

Here you go...

 

[cullenbohannon]

@Jay M and @SoulStation would you two be interested in starting a thread were we could actually discuss and brainstorm ideas as far writing letters to the ATA and congress. I tend to agree with Dr.Nagler that we as sufferers don't do enough. Soul station, you can look up who your congressman is online, and find where to send letters and emails. I know mine and i have talked with about tinnitus and tinnitus research a few times, and he said i was the first person to ever raise anything about T to him. They do see a lot of the letters and requests they get, but i think a very coordinated effort will be more effective.