Tinnitus, Deafness and Ear Problems Support Group
This group is for those coping with Tinnitus (ringing ears or ear noise), hearing loss, and all ear issues. Join to find support and get advice from others.
I have risen to send the following letter to a very well known research scientist into Tinnitus. I had a phone conversation with him where he mentioned that he would like to offer me advice while at the same time i offer him motivation to continue strongly into the Tinnitus Research.
That got me thinking......many of these researchers go to work, go to luch, schedule trips for seminars "annual tinnitus this Tinnitus that", schedule more meetings, schedule discussions, etc...oh....somewhere in there they manage to get some research done...oh...i didn't get our funding in place.....i need to check on that... in the mean time....more lunches, more meetings and more of all the other stuff.......and research falls by the side.
Yes, as a result we suffer and we suffer and we wonder why there is not a simple solution for something that seems otherwise simple......remove the noise and life is good and continues as it once did.
If there are pills to remove headaches,, what the heck are we not finding a solution to remove headnoices.....get it.....headaches,,,,head noices.....what is the problem?
That got me thinking......many of these researchers go to work, go to luch, schedule trips for seminars "annual tinnitus this Tinnitus that", schedule more meetings, schedule discussions, etc...oh....somewhere in there they manage to get some research done...oh...i didn't get our funding in place.....i need to check on that... in the mean time....more lunches, more meetings and more of all the other stuff.......and research falls by the side.
Yes, as a result we suffer and we suffer and we wonder why there is not a simple solution for something that seems otherwise simple......remove the noise and life is good and continues as it once did.
If there are pills to remove headaches,, what the heck are we not finding a solution to remove headnoices.....get it.....headaches,,,,head noices.....what is the problem?
Any way here is the letter below that i have sent to my dear doctor who i truly have faith in. I encourage each and every one of you who subscribe to the pages of this Tinnitus, Daily Strength board to copy this letter and change it to suit your style and send it to a doctor of your choice.
We need to help ourselves. We may not be able to do the research, although many of us are more than ready to be guinnee pigs, but we can provide the sense of urgency we all experience on these boards to these doctors.
Please post your letters here in this topic i started to see how many really do suffer and need help.
Here is my letter:
Hi Dr. ____ .
First i want to thank you for taking time last week to speak with me regarding the terrible condition of Tinnitus that I suffer. I appreciate all your encouragement and respect that you understand what I and others with this condition have to deal with.
I will continue to try my hardest to not sink any further into this Tinnitus' frightful hold. I ask you Dr._____ to please continue your excellent work into finding some help for us sufferers quickly. Please encourage your fellow researchers such as Dr. of ___ ___ University and all others to not delay research and that finding some viable help for us is paramount.
Anything, just a little would go a long way in helping me and others. Unfortunately, the medical and scientific community has yet to step forward with a pill, surgery or other form of treatment that can lower the noise, if not completely to eliminate it. Years of research has been going on everywhere, and unlike some of the other dreadful diseases, no viable treatments have yet come to fruition. With all the research we read about, it continues that science understands so much more about the condition and yet so much less seems to come out in the form of real world solutions in the form of medicine or therapy.
I respect you very much Dr. ____ as I do all the other top-rated researchers here in the United States. I plead with you and others in the research field that an emphasis is placed on finding real world solutions today and not in the future as us sufferers cannot wait.
I have attached a link to the article I mentioned during our conversation regarding the new research findings regarding the cell protective layer called mylene or something along those lines. This article is another step in the right direction, but it just seems to add to the already tall list of research discoveries that have not materialized into help for us sufferers.
Dr.___ Please take my letter with you and post it for all your researchers to see how we sufferers are waiting and hoping for some form of help now. Please let your researchers now that there is a sense of great urgency for us and many others from the military, VA, ENT, Audiologists and all the young teenagers who are growing in the masses with this affliction for a viable cure or at the very least a viable therapy in the form of a pill, surgery or other.
Time is critical. Time is now.
Thank you Dr.___
Victor (MuscleBoy8)
Tinnitus Sufferer
I have an idea, each of us will make a short video clip, saying something like -
"I'm ____, and I am a tinnitus sufferer. Please find a cure for this illness because the noise in my head is unbearable. Please CURE US of this horrible affliction!!!"
Or something to that effect..... Then I gather all the clips and make one movie which I would personally deliver to a major TV station in Toronto or New York.
I know at times, it can be easy to point the finger at scientists and blame them for not finding a solution. However, the problem does not necessarily reside with the individual scientists themselves, but rather with the more global issue of research in general. The problem is that the (research) system is broken. Why? Because there have probably been lots of studies done focused on tinnitus (maybe using animal and even human models); however, not all research reaches the level of "statistical significance," meaning, that the results are not peer-reviewable and publishable. Unfortunately, the research that does not reach "significance" usually does not make its way to the mainstream public, and winds up relegated to some dark place, maybe a graduate student's desk (as most of my null research has done :-).
My point is, writing letters and creating dialogue with scientists helps, because as a scientist, it can be easy to distance your research from the individuals who actually suffer from the condition one may study. For example, I research mechanisms of acute and chronic pain, although I myself do not suffer from chronic pain. Therefore, every one in a while, I try to read up on forums, such as this, to remind myself of the plight that victims who do suffer from chronic pain encounter on a daily basis.
I suffered from tinnitus earlier this year, and I was fortunate enough to catch it early on and nip it in the butt with a high-dose prednisone regimen (which I recommend any of you discussing with your ENTs). However, I still come here from time to time to see if I can offer any perspective from the ivory tower. As I mentioned earlier, I know it's easy to point fingers, but remember, scientists do care, and it doesn't ever hurt to remind them of why they are doing their job. Therefore, writing a letter, as MuscleBoy8 did, is an excellent push in the right direction.
http://www.youtube.com/watch?v=isl4Hqkh8YM
Please post your youtube videos so I can compile them, and don't sugar coat it. Especially you severe cases I want to hear gloom and doom so the world will see the ugly truth.