My Posting Place
- Thread starter threefirefour
- Start date
Member
- Jan 25, 2013
- 3,596
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
Peter Jennings has been dead for years. Can't blame him for our head noise. I've never heard him raise his voice on TV.
I totally agree with this. I'm just saying you can't really promote yourselves as activists when there are people behind the scenes spending a serious amount of time (very long hours) to fight this condition in many different ways. I think it does them an injustice.
However, that said, I would say the primary purpose to this thread is not activism but camaraderie. The mutual effort to get through bad days by having a laugh and lightening the mood. I believe it serves this purpose extremely well as I said in my other post. I just wouldn't blur the line into activism unless you intend on going there as a group, and if you do, I think the subforum you're looking for is the awareness & fundraising section.
I think we see eye to eye on certain things but I wouldn't really say that it is an injustice because there are many passionate people here about finding the cure, it just has a tendency to lose focus at times (which will happen when you throw in off topic discussions into the mix).
I believe that it has some of the brightest people on the site that have gathered together here. "Come for the memes, stay for the activism." The activism can still begin here but continue elsewhere.
I disagree. If you look at the context of that subforum it is more about awareness in the media (stories of other peoples' activism, etc) or fundraising. The only thing that is close to activism for us there is volunteering for the website. I think if a new section is created, we could all gather there specifically for reaching out to organizations and big players in the industry.
We would also have a place to post responses from professionals in a centralized location (perhaps making it a sticky on the thread) instead of digging through the research forum to find them.
I think this would kick efficiency up to another level.
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Director- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
I agree. While this thread certainly has its value and obviously means something to the folks who gather here, you cannot qualify as activism what is basically 99% contained within the thread and read only by those who visit here; and yes, the visitors probably come here for the camaraderie more than anything else - which is of course fine. Activism however, to me, means getting your voice out there in the broader world, having a clear target audience in mind and clear goals wrt to influencing certain behaviours and promoting real world change. Activism is more than just sprouting your opinion (again, there's nothing wrong with that, but it usually does not achieve anything). It requires clear planning, outreach to many different stakeholders, preparing well crafted campaign materials, having a social media strategy, and many months of consistent follow-up to keep pushing the message. It is, in sum, a lot of work.
I think creating a new section of the forum without first seeing what you guys are capable of actually organising in terms of activism would be getting ahead of ourselves. If we could see proof of concept, i.e. a clear campaign plan from you, then we can discuss where it fits in the forum and how Tinnitus Talk can support your efforts. Unfortunately, we often get members posting good ideas for new projects, but in 99% of cases they don't have the time, resources, inclination, skills, or perseverance to actually follow through. So please forgive my skepticism. I would be more than happy to be proven wrong
To give an example of a project I'm currently working on and what it entails (it doesn't fall in the "activism" category per se, but in terms of time and resources spent it's much the same): We want to publish a Tinnitus Guide. It will be an objective, well-balanced, evidence-based resource to help those who come online seeking help with their tinnitus. It should serve as a counterbalance to the forum itself where many people sprout different opinions as facts and it's hard to know what to believe. The Guide will cover many areas like how to get medical help, and how to deal with your distress, but also facts and figures on tinnitus, an overview of causes and treatments, how to spot pseudoscience, etc. The end result should be well-referenced, and will contain over 20 chapters of about 4-5 pages each.
The work that goes into any such project is tremendous. I have personally spent a few hundred hours (!) already - next to my full-time job - and it's nowhere near ready yet; although we do hope to publish at least a couple of chapters soon. It's not just the writing itself that costs time, but doing the background research, coordinating with the volunteers who are contributing their writing, and doing multiple review and editing rounds for each chapter. We also have reached out to several experts and researchers who will either directly contribute or review work for us. In sum, it's a mammoth project.
And most tinnitus projects are like that, whether it concerns resource production, like the Tinnitus Guide, or whether it concerns awareness raising, fundraising, activism, etc. @Ed209 could probably tell you a few things about how much time and energy he has spent (90% behind the scenes) to get the Danny Boy fundraiser up and running, and manage the grant programme that resulted from it. If you really want tangible results, i.e. something that looks professional, can reach a broad audience, and has a real world impact, there's so much more work that goes into it than meets the eye.
Again, none of this is meant as discouragement. We are more than happy to facilitate any activism plans (provided they're in line with our mission). As long as you realise that it requires more than just posting on this forum. Feel free to send any concrete, well-thought out plans our way, and we will review and advise and support where we can.
The young people here at first seemed to me similar to other quotes. However once I took time to understand their thinking I realized they're on a correct path. The people who understand this have their thinking changed and go on to share this thinking with others outside this forum in our daily lives. A cure is far away but the lives of these young people will reach into this future. I'm now on their side and have faith in their approach among others. It's a big world, there is room for everyone's opinion and all of them are worth something.
I think that generally helping to raise awareness, even on this forum, of "hidden" hearing loss and its implications is a worthy (if relatively minor) endeavor.
I am all for activism. I truly understand the need to the scientific trials to take place, and for frequencytx to be able to protect their IP, but think about if Congress subsidized them like they do Elon Musk.I agree. While this thread certainly has its value and obviously means something to the folks who gather here, you cannot qualify as activism what is basically 99% contained within the thread and read only by those who visit here; and yes, the visitors probably come here for the camaraderie more than anything else - which is of course fine. Activism however, to me, means getting your voice out there in the broader world, having a clear target audience in mind and clear goals wrt to influencing certain behaviours and promoting real world change. Activism is more than just sprouting your opinion (again, there's nothing wrong with that, but it usually does not achieve anything). It requires clear planning, outreach to many different stakeholders, preparing well crafted campaign materials, having a social media strategy, and many months of consistent follow-up to keep pushing the message. It is, in sum, a lot of work.
I think creating a new section of the forum without first seeing what you guys are capable of actually organising in terms of activism would be getting ahead of ourselves. If we could see proof of concept, i.e. a clear campaign plan from you, then we can discuss where it fits in the forum and how Tinnitus Talk can support your efforts. Unfortunately, we often get members posting good ideas for new projects, but in 99% of cases they don't have the time, resources, inclination, skills, or perseverance to actually follow through. So please forgive my skepticism. I would be more than happy to be proven wrong
To give an example of a project I'm currently working on and what it entails (it doesn't fall in the "activism" category per se, but in terms of time and resources spent it's much the same): We want to publish a Tinnitus Guide. It will be an objective, well-balanced, evidence-based resource to help those who come online seeking help with their tinnitus. It should serve as a counterbalance to the forum itself where many people sprout different opinions as facts and it's hard to know what to believe. The Guide will cover many areas like how to get medical help, and how to deal with your distress, but also facts and figures on tinnitus, an overview of causes and treatments, how to spot pseudoscience, etc. The end result should be well-referenced, and will contain over 20 chapters of about 4-5 pages each.
The work that goes into any such project is tremendous. I have personally spent a few hundred hours (!) already - next to my full-time job - and it's nowhere near ready yet; although we do hope to publish at least a couple of chapters soon. It's not just the writing itself that costs time, but doing the background research, coordinating with the volunteers who are contributing their writing, and doing multiple review and editing rounds for each chapter. We also have reached out to several experts and researchers who will either directly contribute or review work for us. In sum, it's a mammoth project.
And most tinnitus projects are like that, whether it concerns resource production, like the Tinnitus Guide, or whether it concerns awareness raising, fundraising, activism, etc. @Ed209 could probably tell you a few things about how much time and energy he has spent (90% behind the scenes) to get the Danny Boy fundraiser up and running, and manage the grant programme that resulted from it. If you really want tangible results, i.e. something that looks professional, can reach a broad audience, and has a real world impact, there's so much more work that goes into it than meets the eye.
Again, none of this is meant as discouragement. We are more than happy to facilitate any activism plans (provided they're in line with our mission). As long as you realise that it requires more than just posting on this forum. Feel free to send any concrete, well-thought out plans our way, and we will review and advise and support where we can.
http://www.latimes.com/business/la-fi-hy-musk-subsidies-20150531-story.html
I think they should be granted authority to immediately determine whether this helps tinnitus sufferers and they already claim it is safe. In my opinion tinnitus is far worse than just having hearing loss by itself. Its is ABSOLUTE TORTURE. We need help.
If any of the trial participants report a reduction in their tinnitus, the government should immediately grant them special privileges to rapidly deploy this medicine, and heavily subsidize their company.
If they dont already know now if it reduces tinnitus then they will very soon. Definitely by December. I know this trial is focusing on safety at various doses but cant they also just ask, "did you have tinnitus? Did it reduce or go away?" It would be great if we could all start emailing our Congressmen and women and implore them to take a look at what is going on and beg them take special action. Building electric cars and going into space isnt going to alleviate suffering. This site could very easily get the ATA to go along with this and lobby the government of we relentlessly campaign.
What better way could we "support our troops" other than helping them alleviate their #1 disability? Today I'm going to try and make a short video that drives home this idea of activism.
Seriously frequencytx will know about safety and efficacy by December, there is really no good reason to not just ask a trial participant if their tinnitus reduced and if so sit them down in front of a congressional committee and give their testimony and then allow frequencytx to start a custom open phase trial while also heavily or completely subsidizing their company and giving special bankruptcy protections for hearing aid makers. If this stuff cures tinnitus, which they will know VERY SOON, then these people deserve to be very rich and have statues of themselves built all around the VA hospitals.
- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
Hmm, you seem to have totally missed my point. I was not criticising the folks on MPP for their opinions, nor insinuating they are somehow on the 'wrong' path - I'm really quite neutral on that front.
I was merely saying that in my opinion MPP activity does not constitute 'activism,' because it does not reach a wide audience nor has any impact in the 'real' world (as far as I can tell). I think I explained quite extensively in my previous post how I would define activism, and how much hard work it is. With all due respect, posting in MPP, while it may have some value in and of itself, does not achieve much on that front.
Please do correct me if I'm wrong. If you can give me any concrete examples of how real change has been affected through MPP, or even just any concrete output beyond the contents of this thread, such as a video, a blog post, a survey, a fundraiser, etc. I will humbly retract my previous statement.
I was not aware of this, and if indeed you guys are trying to make an impact by talking to people in your daily lives, that would be wonderful. This has not been my impression from reading MPP though - do you have any examples?
I wasn't targeting you, just in general. Please accept my apologies.
I have taken what these young people have taught me and put it in the ears of five doctors, their assistants and office staff. (That's a lot of people from one person, imagine the compounding effects of fifty people.)
Not to mention everyone I meet wearing hearing aids with tinnitus on the street or through social media.
- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
Well done! Can you imagine the snowball effect if each person with tinnitus would do that?
Hazel, the last ENT consultant I saw after my MRI disaster admitted I knew more about tinnitus than him, which I thought was quite remarkable. I've never heard any Dr say anything like that before, and to be fair to him, his demeanour was very encouraging and open. I thought he was really good. I spread the message whenever I have the opportunity. I shout it from the rooftops and hide it from no one.
Every little bit of awareness is awesome. Imagine if every person reading this told five people about tinnitus tomorrow and warned them about the dangers that can lead to it. Each time we speak about it it really does snowball. I mean look at the ice bucket challenge phenomenon, at some point one or two guys, or girls, came up with that idea and then told a few others to do it. Now that's what I call a snowball!
If we don't speak up or attempt to influence other people's views, then nothing will change, and we must accept that. We can all play a role, no matter how small.
As the famous chaos theory quote says:
It has been said that something as small as the flutter of a butterfly's wing can ultimately cause a typhoon halfway around the world.
First off, I think everybody will agree that we appreciate the work you've put in and a guide will no doubt be helpful for newcomers with tinnitus.
I didn't mean that a new section should be created only for MPPers, though they would most certainly be the catalyst. I believe that a new section should be opened up for all activism everyone can see. This will make those that don't have time, resources, inclination or skills (that you've mentioned before) still be able contribute to the discussion and bring in important ideas that other people who have any of the above to follow through. It is important to have all of these in a single place as I don't feel that the Awareness & Fundraising section quite meets that definition as mentioned in my previous response.I think creating a new section of the forum without first seeing what you guys are capable of actually organising in terms of activism would be getting ahead of ourselves. If we could see proof of concept, i.e. a clear campaign plan from you, then we can discuss where it fits in the forum and how Tinnitus Talk can support your efforts. Unfortunately, we often get members posting good ideas for new projects, but in 99% of cases they don't have the time, resources, inclination, skills, or perseverance to actually follow through. So please forgive my skepticism. I would be more than happy to be proven wrong
None taken. Of course TT would have to sign off on any major activism plans for it to sponsor them, but in order to get a major plan up to the level that you were describing, it would have to start from the bottom. Rome wasn't built in a day, after all. I believe TT would miss a great opportunity by excluding a new section specifically for activism because they will never know what people are capable of when they are inspired by others to act.
We have provided members and visitors with numerous opportunities to be inspired by our and others' work over the last 7 years.
Starting from things like Team Trobalt back in the day, or the Collaboration Space, or the Join the Dots.
We have reached out to the full member base many times with pleas to help on a multitude of projects, but the response has always been poor, to say the least.
I really don't think another area for brainstorming is going to change anything. I'm not saying we aren't going to try that though, at the very minimum that would be yet another experiment to demonstrate to people with what kind of problem we're dealing with here, and how insanely hard it is to galvanize the tinnitus community (for which there are various reasons, one being that very few want to deal with anything tinnitus related, not a minute longer than they need to, and especially after they have habituated).
One area I think where we can improve is having a category / page where we would list more bite-sized tasks people can help out with. Maybe a person is able to commit to doing a once-off 2-hour task, but is not up to weekly volunteering.
Obviously I strongly agree with everything @Hazel and @Ed209 have posted above.
The community needs a campaign to follow. It would be great if the ATA would start one. I highly doubt they will.
@Markku
Can we please start a lobby here to get our governments to loosen up on the development of hearing loss drugs?
Think about it. This trial for fx 322 will be over in December.
If the FDA would cut the red tape, they could immediately start the efficacy trial immediately and evaluate it in 3 months and we could start having treatments by the middle of Spring to early Summer next year. We would have to considerably organize our efforts here and reach out to Veterans' groups. Not impossible.
If someone's hearing loss is alleviated from this stuff we don't need a year long peer review process for every little step.
What do you think?
Can we please start a lobby here to get our governments to loosen up on the development of hearing loss drugs?
Think about it. This trial for fx 322 will be over in December.
If the FDA would cut the red tape, they could immediately start the efficacy trial immediately and evaluate it in 3 months and we could start having treatments by the middle of Spring to early Summer next year. We would have to considerably organize our efforts here and reach out to Veterans' groups. Not impossible.
If someone's hearing loss is alleviated from this stuff we don't need a year long peer review process for every little step.
What do you think?
Why don't you ask Frequency Therapeutics what they think of your idea?
I'm wondering though, even if FDA cut the red tape, how do you know Frequency Therapeutics would be ready to start the efficacy trial immediately? How do you know how long it takes them to evaluate the results?
Seeing how the system works, and how involved double blind placebo-controlled trials are, I think you would be disappointed with your estimations.
You also need to understand the financial risks Frequency Therapeutics has, and the motives of their funding partners. They surely want to play it as safe and thoroughly as possible in an effort to avoid any unwelcome obstacles when it comes to regulation and getting it to market.
The amount of funding and the number of bright minds they have working for them, I would rest assured they have considered all these things you are bringing up, including matters of lobbying.
I also wonder, how realistic is it to even think of lobbying the government that quickly? That sort of work takes often years and years. And it often requires a ton of money and resources to do that.
That's one of the reasons ATA moved its headquarters to Washington DC, to make lobbying efforts a little easier (compared to being in Oregon where they previously were).
You are right though, if the large veterans' groups started focusing on increased amounts of awareness / lobbying going into tinnitus and hearing loss, that could be a big help, for current and future tinnitus research and programs in mind.
I believe that the difference would be that the people who wanted to help or volunteer would specifically go to that section.
The way that I see it is that this request opens up dialog with the community instead of closed door discussions. And I want to be quite frank, I want to contribute.
It could be used as a way to organize events or even calling Congressmen & women in our area to get involved.
It should go something like this:
1. The plan would be formulated with anyone who wanted to contribute on the forum section along with set goals
2. Someone could design flyers and/or other promotional materials (emails, banners, etc)
3. Come up with a budget plan
4. Schedule a date and place
5. Fundraiser for materials & arrangements for the event
6. The users of this site and perhaps other sister Tinnitus sites/twitter would be contacted to inform them of the plan
7. Execute the plan
This is really just scratching the surface on possibilities but it will get better and more efficient every time we have an event. The more events there are, the more people will get on board.
And really, we would just have to experiment to see what works. Ultimately, we all have the same goal: we want a cure or at the very least, a treatment. The potential is there if we can find the right people.
I think this is a really good idea because someone who doesn't have a bunch of time will still be able to contribute. This could be incorporated into #2 above or other tasks like handing out flyers, posting them on local campuses, etc.
I know this is probably the wrong forum to post suggestions, but those are my 2 cents.
Yeah. You're right. So why isnt the ATA already doing something like this? Is there not enough brain power to accomplish something like this?
Deathtotinni
Member
- Dec 21, 2017
- 157
- Tinnitus Since
- 9/10/17
- Cause of Tinnitus
- Qtip and maybe a sound..who knows
No word on if it works because it's going to likely be another month or so till they see much change. I do know that out of the 19 that had gotten it so far nobody has had any side effects other than some burning but that's expected because of the steroid and the shot in your ear drum. 90% of drugs that make it to human trials do in fact work but the safety of them is mainly what they are testing for. We will know if the drug works when they go on to the next phase.
There's absolutely merit to your thoughts, but really, let me throw this back to you; can you formulate a single awareness and/or fundraising project with people who are interested, put it up in Awareness & Fundraising in a new thread. Assuming we also think the project has value, we will then make sure that thread is promoted across the site and on our social media.
If this single project is demonstrated to be successfully executed, we can think about adding a new category for these types of things.
The project could be as simple as creating a new "Sounds of Tinnitus" video, an update from our years-old video, which has so far gotten around 200K views on YouTube and has the best like/share ratio from all of our videos that we have posted on our Tinnitus Hub Facebook page.
Or the project could be something totally different.
We just would like to see a project planned out, people committing to it, and successfully executing.
Do you find this proposal of interest?
This all sounds great, but I think you are massively underestimating how incredibly hard it is to do all those things, unless you're willing to do it on your own. Getting people involved is not as easy as you might think.
I'm all for your positivity though
Deathtotinni
Member
- Dec 21, 2017
- 157
- Tinnitus Since
- 9/10/17
- Cause of Tinnitus
- Qtip and maybe a sound..who knows
They take time to look at all the data I think. Does seem like a long time. Maybe a fair guess would be next study would start 6 months after the last study. This is study is phase 1.5 so phase 2 could happen even faster. They are going to hurry this study along, both by the FDA and the the company.
Deathtotinni
Member
- Dec 21, 2017
- 157
- Tinnitus Since
- 9/10/17
- Cause of Tinnitus
- Qtip and maybe a sound..who knows
Certainly, I'll give it some thought. I need time to come up with a premise, and I graduate in a couple of months so I will have more time to dedicate to it.
- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
LOL, I never thought I would become this active on MPP. Let's see how long it lasts 
At the peril of it seeming like we're ganging up on you (sorry!), I do want to respond once more. Your initiative is truly admirable, and as I and @Markku have said before, we will support your project in any way we can. But we're also asking you to learn from our experience.
@Markku has been running this site for 7 years, and @Ed209 has been around for 3 years or so and is the only member I can think of (outside of core TT staff) who has successfully carried out big projects. What they're trying to tell you is that it's not the structure of the forum that is the obstacle here, but getting people to dedicate themselves to projects for the long haul. Even in the six months that I've been volunteering, I have seen many members come up with great project ideas and none of them follow through.
I will be the first to acknowledge that we need to do a better job of communicating the various volunteering options! But I also know from experience that making people aware of project ideas and how they can contribute is not the hard part (we have Awareness & Fundraising, the Advocates section, the newsletter, special alerts, etc.). It's when push comes to shove and people realise how much work is actually involved that they back out. Every time, predictable like clock work. If I sound cynical, it's probably because I am a bit, LOL.
So please do follow through with your idea; we're available for support and advice any time! And good luck with the final stretch to graduation
At the peril of it seeming like we're ganging up on you (sorry!), I do want to respond once more. Your initiative is truly admirable, and as I and @Markku have said before, we will support your project in any way we can. But we're also asking you to learn from our experience.
@Markku has been running this site for 7 years, and @Ed209 has been around for 3 years or so and is the only member I can think of (outside of core TT staff) who has successfully carried out big projects. What they're trying to tell you is that it's not the structure of the forum that is the obstacle here, but getting people to dedicate themselves to projects for the long haul. Even in the six months that I've been volunteering, I have seen many members come up with great project ideas and none of them follow through.
I will be the first to acknowledge that we need to do a better job of communicating the various volunteering options! But I also know from experience that making people aware of project ideas and how they can contribute is not the hard part (we have Awareness & Fundraising, the Advocates section, the newsletter, special alerts, etc.). It's when push comes to shove and people realise how much work is actually involved that they back out. Every time, predictable like clock work. If I sound cynical, it's probably because I am a bit, LOL.
So please do follow through with your idea; we're available for support and advice any time! And good luck with the final stretch to graduation
To be honest, Hazel, you're like one in a million. I would classify Glynis, Steve, and Markku in the same bracket. You are all truly exceptional people who go above and beyond.LOL, I never thought I would become this active on MPP. Let's see how long it lasts
At the peril of it seeming like we're ganging up on you (sorry!), I do want to respond once more. Your initiative is truly admirable, and as I and @Markku have said before, we will support your project in any way we can. But we're also asking you to learn from our experience.
@Markku has been running this site for 7 years, and @Ed209 has been around for 3 years or so and is the only member I can think of (outside of core TT staff) who has successfully carried out big projects. What they're trying to tell you is that it's not the structure of the forum that is the obstacle here, but getting people to dedicate themselves to projects for the long haul. Even in the six months that I've been volunteering, I have seen many members come up with great project ideas and none of them follow through.
I will be the first to acknowledge that we need to do a better job of communicating the various volunteering options! But I also know from experience that making people aware of project ideas and how they can contribute is not the hard part (we have Awareness & Fundraising, the Advocates section, the newsletter, special alerts, etc.). It's when push comes to shove and people realise how much work is actually involved that they back out. Every time, predictable like clock work. If I sound cynical, it's probably because I am a bit, LOL.
So please do follow through with your idea; we're available for support and advice any time! And good luck with the final stretch to graduation
- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
Thanks for offering! Maybe the best place to start is: what are your skills and areas of interest?
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