Poll: Why Aren't You Donating to Tinnitus-Related Fundraisers?

[Markku]

I know it's swings and roundabouts because you still pay towards the fundraising platform

Yep.

A donor can choose not to tip GoFundMe, making the platform fee £0:



However, GoFundMe's payment processing still takes away 2.9% + £0.25 per donation (which I think is not unreasonable compared with other online payment processors - one can google for comparisons, "online payment gateway fees comparison" etc.). And in regards to other online fundraising tools, JustGiving, for example, takes a 5% fee for each donation.

 

[coffee_girl]

This is an interesting question, and I think it's funny if anyone would fool themselves into thinking that people would give an honest answer on such a sensitive topic.

There are enough clinical trial researchers in my family and I know already everything that happens behind the scenes--so I wouldn't be donating any money to anything until I've seen the papers and done the research on whatever company that my money is going towards.

Personally I am a "go big or go home" way of thinking, I care about results, not good feelings.

Also, if it is a business opportunity for me... it would be nice to invest and see what kind of returns I get. =]

 

[Ed209]

Let's not forget that U.K. tax paying donors can gift aid their donations which gives an extra 25% on top.

I'm not sure if this is possible in other countries.

 

[GregCA]

This is an interesting question, and I think it's funny if anyone would fool themselves into thinking that people would give an honest answer on such a sensitive topic.

Why wouldn't they? It's anonymous and costs nothing: unlike an actual donation, this doesn't require any disbursement.

There are enough clinical trial researchers in my family and I know already everything that happens behind the scenes--so I wouldn't be donating any money to anything until I've seen the papers and done the research on whatever company that my money is going towards.

Fair enough.
Have you ever had the chance to follow this process before? (ie donated after being able to perform your due diligence)
How hard was it to get the papers needed for you to do the diligence?
Were you assisted by any platform for such funding? (I'm wondering about logistics like "clear room" for confidential info, NDAs, etc...)

Also, if it is a business opportunity for me... it would be nice to invest and see what kind of returns I get. =]

There's nothing wrong with looking at investment opportunities through "investor glasses", but fundraisers for cures as discussed in this thread aren't designed to bring you a return on investment in the form of money: they are supposed to bring you a cure (or at least make progress towards), for yourself if you are affected by the condition, or for friends/family/rest of the world, if you feel altruistic enough to care for them. That's your vested interest.

If you are only interested in $$ returns, then you can look into funding these companies through traditional funding avenues (friends & family rounds, seed funding, SAFEs, venture capital, secondary markets, etc...). A "donation-based fundraiser" would not be the right instrument for that.

 

[Tinniger]

I do not believe that the lack of success of tinnitus treatment is due to lack of money.

 

[Ed209]

Also, if it is a business opportunity for me... it would be nice to invest and see what kind of returns I get. =]

Interestingly, I used to heavily invest in the stock market, before I got married , and I made some very good returns on two medical companies. One made a cutting edge breakthrough in treating leukaemia and the other sold contraceptives.

I was a huge risk taker and mainly traded the penny stocks specialising in mining and oil companies. I made my money and then got out basically. I used to post quite regularly on the iii forums.

 

[coffee_girl]

I used to heavily invest in the stock market, before I got married , and interestingly, I made some very good returns on two medicatical companies. One made a cutting edge breakthrough in treating leukaemia and the other sold contraceptives.

I was a huge risk taker and mainly traded the penny stocks specialising in mining and oil companies. I made my money and then got out basically. I used to post quite regularly on the iii forums.

That's really awesome! I'm a not a huge risk taker, but having tinnitus has allowed me to realize that there are so many things that aren't invented yet that would really help people ease through the day to day experience with tinnitus. I dunno, I see the tinnitus community as an untapped market, hopefully others will too.

 

[attheedgeofscience]

There are enough clinical trial researchers in my family and I know already everything that happens behind the scenes--so I wouldn't be donating any money to anything until I've seen the papers and done the research on whatever company that my money is going towards.

Donations due to the (limited) size of the collections and suggested beneficiaries wouldn't go towards a pharma entity but probably towards basic research at an institution. Tinnitus research is at a point where – if the first wave of therapies fail (e.g. AM, AUT, OTO) – then it may be a considerable while before investors are willing to take the risk and finance another pharma entity before the main topics such as understanding tinnitus subtypes and methods/diagnostics for defining patient profile categories reach a sufficiently advanced stage. AM-101 is an example of a drug that may well be efficacious but due to other factors cannot be proven to work.

By definition, a donation is not an investment. A donation means you are giving your money away (for free). If your "donation" was going towards a pharma entity it would be an investment. This shouldn't require some grand analysis – donations can come in any size. So... just donate the petty 10 bucks before your brain – and that of the rest the tinnitus community – short-circuits with all the "thinking" you guys are doing. The tinnitus community is so lame.

@GregCA – the option called "I don't donate because I am an idiot" seems to be missing.

 

[Greg Sacramento]

I have a systematic condition where I get dopamine hits. Because of this, I will give the shirt off my back to someone else. One of my college majors was finance/economics. I've done very well with stock investments and made good money within my regular jobs, but I gave a lot of money to animal, children and elderly care. Now I need my wife's permission to spend money. Yesterday I wanted to buy some Apple, but I had to call her at work for approval. I made the trade at 222 and she sold it early in the trading session today at 224. It went higher.

 

[coffee_girl]

I have a systematic condition where I get dopamine hits. Because of this, I will give the shirt off my back to someone else. One of my college majors was finance/economics. I've done very well with stock investments and made good money within my regular jobs, but I gave a lot of money to animal, children and elderly care. Now I need my wife's permission to spend money. Yesterday I wanted to buy some Apple, but I had to call her at work for approval. I made the trade at 222 and she sold it early in the trading session today at 224. It went higher.

Haha no good deed goes unpunished I guess =P

 

[Ed209]

I do not believe that the lack of success of tinnitus treatment is due to lack of money.

Unfortunately, it is due to lack of money (look at the facts). Money makes the world go round and tinnitus research has a chronic lack of it. Without it, research will stagnate, and we will most likely continue in the same manner for the foreseeable future. This also explains why we're so behind the times.

We need funding to discover treatments; it's as simple as that. If sufferers aren't prepared to be part of the solution then non-sufferers certainly won't.

 

[david c]

I do not believe that the lack of success of tinnitus treatment is due to lack of money.

Largely accurate. The problem is in who controls the research money and what it gets spent on. Certainly in the UK most research money has been spent on "management strategies" research, which is designed to enable the audiology industry and various "wellbeing" therapists to get their share of the tinnitus pound.

There is a clear parallel with ME research - (again ME like tinnitus is a little-understood condition). ME sufferers realised that the research money was being wasted on "management strategies" for ME - most with flawed data - designed to enable therapists to monetise ME. ME sufferers then took action and put a stop to this - challenging the flawed research and vowing that in the future research money would only be spent on real bio-medical research. The result? They have finally started to make progress in understanding their condition.

The message to tinnitus sufferers is clear.

 

[GregCA]

ME sufferers then took action and put a stop to this - challenging the flawed research and vowing that in the future research money would only be spent on real bio-medical research. The result? They have finally started to make progress in understanding their condition.

Please see bolded text above: what action(s) did they specifically take?

 

[Greg Sacramento]

Unfortunately, it is due to lack of money (look at the facts). Money makes the world go round and tinnitus research has a chronic lack of it. Without it, research will stagnate, and we will most likely continue in the same manner for the foreseeable future. This also explains why we're so behind the times.

We need funding to discover treatments; it's as simple as that. If sufferers aren't prepared to be part of the solution then non-sufferers certainly won't.

Agreed ………..

Number of $ for tinnitus research are intermixed with crossovers with hearing loss research and other research medical conditions where tinnitus can be received. This is a much higher dollar figure.
This can be seen from data bases for medical research funding, but a lot of adding of numbers needs to be made.

I always take reporting figures in association with any thing with a grain of salt.

The ATA quotes about 11 million spent in 2010 on DIRECT tinnitus research.

The percentage who have severe tinnitus is quoted to be between 2% and 5%. Those with tinnitus are quoted in different amounts, but most quote 10% of population. Hearing loss quotes are higher and this includes many variable statistics such as age related.

I had communicated with a few politicians about tinnitus research and responses were:

Many have it mildly - Many see it reduced - Many learn to live with it - It's caused from hearing loss or another medical problem.

The US military has said that tinnitus is the number one disability. The US government has said that treatment costs for veterans are approaching 3 billion.

 

[david c]

Please see bolded text above: what action(s) did they specifically take?

So you have asked for more information about this and what action they took. Specifically they challenged the results of a major study in the Lancet claiming that CBT was an effective treatment for ME.

To do that they had to go to court to force disclosure of data from that Lancet study which showed that the measures of apparent success for CBT were based on subjective outcomes not on objective ones. They also showed that the authors of the Lancet study hadn't disclosed to participants in the trial their commercial conflicts of interest.

The result - the Lancet study into CBT for ME has been widely discredited and the ME association now have seven major bio-medical studies into ME ongoing.

Meanwhile the BTA is wasting precious money on (yet another) CBT for tinnitus study by a man who has also failed to declare commerical conflicts of interest

If you are interested in this @GregCA then I suggest that you read about it fully here and here:

http://www.virology.ws/2015/10/21/trial-by-error-i/

https://www.meassociation.org.uk/20...al-scandals-of-21st-century-20-february-2018/

 

[GregCA]

To do that they had to go to court to force disclosure of data from that Lancet study which showed that the measures of apparent success for CBT were based on subjective outcomes not on objective ones. They also showed that the authors of the Lancet study hadn't disclosed to participants in the trial their commercial conflicts of interest.

By "they" you mean more than one person I imagine, got together and filed a lawsuit (since they went to court for the "PACE trial"), correct?

Have you thought about leading a similar process for Tinnitus? You seem passionate about it, but until you propose an actionable plan and are willing to commit resources behind it to lead it, I'm afraid you will not get much traction.

I'm asking this in the most genuine way: why aren't you leading this process if you believe so strongly that it should be done? You could say "I'm starting a legal process to discover blablabla, because blablabla, and I'd like others to join this discovery process. Please contact me if you'd like to join." and see what happens. I don't even think it would violate guidelines of this forum if you created a thread for people to ask questions about this (as long as you present it in a fairly factual way). It's not unreasonable to want to challenge studies.

What I'm trying to say is that the public finger pointing you are engaged in to say "look! the ME guys have had to raise hell to challenge a study!" is good for awareness, but not great to induce action.

 

[david c]

By "they" you mean more than one person I imagine, got together and filed a lawsuit (since they went to court for the "PACE trial"), correct?

Have you thought about leading a similar process for Tinnitus? You seem passionate about it, but until you propose an actionable plan and are willing to commit resources behind it to lead it, I'm afraid you will not get much traction.

I'm asking this in the most genuine way: why aren't you leading this process if you believe so strongly that it should be done? You could say "I'm starting a legal process to discover blablabla, because blablabla, and I'd like others to join this discovery process. Please contact me if you'd like to join." and see what happens. I don't even think it would violate guidelines of this forum if you created a thread for people to ask questions about this (as long as you present it in a fairly factual way). It's not unreasonable to want to challenge studies.

What I'm trying to say is that the public finger pointing you are engaged in to say "look! the ME guys have had to raise hell to challenge a study!" is good for awareness, but not great to induce action.

To be honest @GregCA I think I've already given you quite a lot of time providing you with links which you could quite easily have googled yourself. The "they" means the ME sufferers represented by the ME association.

The ME association actually represents the interests of ME sufferers not the therapists who make money from ME - note the important distinction with the BTA.

I certainly don't have the financial means to instigate a complex court case - thanks so, so much for the suggestion that I do though - I'm sure it was entirely genuine!!

I don't know whether you are based in the UK @GregCA but the main suggestion I would give to people there is not to give money to The British Tinnitus Association - it won't be spent on bio-medical research for a cure but the bogus research which the ME Association were able to challenge.

New tinnitus sufferers would be much better off spending any money that they have on anything which will create a positive environment for their tinnitus to improve - eg cutting down on noise and stress in their lives.

In terms of things I would be happy to donate (some) money to I gave two suggestions to the BTA recently for chronic and acute tinnitus - one relating to medication, the other to HBOT. Naturally as neither of these favour the audiology industry or the Mindfulness/CBT industry who are the BTA's main client base, they weren't accepted.

 

[Greg Sacramento]

Agreed ………..

Number of $ for tinnitus research are intermixed with crossovers with hearing loss research and other research medical conditions where tinnitus can be received. This is a much higher dollar figure.
This can be seen from data bases for medical research funding, but a lot of adding of numbers needs to be made.

I always take reporting figures in association with any thing with a grain of salt.

The ATA quotes about 11 million spent in 2010 on DIRECT tinnitus research.

The percentage who have severe tinnitus is quoted to be between 2% and 5%. Those with tinnitus are quoted in different amounts, but most quote 10% of population. Hearing loss quotes are higher and this includes many variable statistics such as age related.

I had communicated with a few politicians about tinnitus research and responses were:

Many have it mildly - Many see it reduced - Many learn to live with it - It's caused from hearing loss or another medical problem.

The US military has said that tinnitus is the number one disability. The US government has said that treatment costs for veterans are approaching 3 billion.

@Ed209 I heartfully agree with you, but I do think that what I said in my last post makes sense. Particularly with first three lines beginning with 'Number' …

I called someone that has professional expertise with medical research and she said I nailed it. She also said the same to my other posts on this subject and fund raising. She had some other thought on tinnitus research, but I don't feel a welcome to post them. She also viewed the survey above and commented on that.

 

[GregCA]

I certainly don't have the financial means to instigate a complex court case - thanks so, so much for the suggestion that I do though - I'm sure it was entirely genuine!!

Your irony is certainly not helping corral enough critical mass to push your agenda forward, no matter how legit it is. It's unfortunate that you are questioning my intentions, because I was really interested in the topic you brought up to the table.

I wish you luck in your endeavour.

 

[TuxedoCat]

Personally, I wouldn't be surprised if it's the US Department of Defense that has the money for tinnitus research.

Michael Hoffer, MD, the chairman of ATA's Scientific committee is an ex-military medic, Jeremy Turner has/had a 1.5 million dollar grant from the DoD and he's on the ATA committee and LaGuinn Sherlock, chair of the board is or was a VA research audiologist. Something is going on there?

TC

 

[Tinniger]

The problem is that tinnitus is largely not understood.

It is possible that the term tinnitus is already wrong because it describes a symptom of various clinical conditions as it is the case e.g. with headache.

The "researchers" disagree. Some tell of destroyed hair cells in the inner ear, others locate the problem in brain nuclei, others say that a somatic problem with anatomical structures such as head muscles may be present in a large number of patients.

Let's compare it with high jump

I have the impression that all researchers are working on improving the straddle.

That's why I don't want to give them any money.

What is missing is the discovery of the Fosbury Flop - a paradigm shift.

 

[Greg Sacramento]

Naturally as neither of these favour the audiology industry or the Mindfulness/CBT industry who are the BTA's main client base, they weren't accepted.

That's a system factor within business, politics or any structure. One example - If you want to be a vendor for any hospital, a donation is needed. I don't think that the BTA uses system factors. Hearing aides are also needed by many. The BTA also educates on cause of hearing loss.

You mention seven trials on tinnitus. There's also has been thousands - or existing trials/research on medical conditions. Medical conditions that can cause tinnitus. The trials/studies aren't listed under a tinnitus heading.

There's presently 650 million dollars for neuro research trials/studies or available in funds for neuro research of GABA, GABAA, neutrons and pathways. Again, tinnitus isn't listed in neuro research as a study title, but it sure is part of the thought process. There's several tinnitus studies per brain research by universities.

In Cambridge Massachusetts, there are two associations, but maybe just one now that's reviewing a 40,000 compound library to find aides for tinnitus in various ways. Many associations will rarely release a press statement.

There's no one cause of tinnitus nor one cure.

 

[david c]

That's a system factor within business, politics or any structure. One example - If you want to be a vendor for any hospital, a donation is needed. I don't think that the BTA uses system factors. Hearing aides are also needed by many. The BTA also educates on cause of hearing loss.

Your perspective on this is very much an American one and not correct for the UK - for example your point about hospitals and donations is simply incorrect in the UK where the vast majority of hospitals are State NHS ones.
The BTA on the other hand has a large number of corporate donors, who expect a return on their investment and get it in terms of the BTA's slanted research programme.

You mention seven trials on tinnitus.

No - in so far as I made any reference to seven research trials it was for the bio-medical research trials the ME association are running to investigate ME. The BTA aren't doing anything like this. Their focus is entirely on "management strategies" research.

In terms of the advice I would give to any recent British tinnitus sufferer who has some spare cash - I would spend it on making your own life less stressful and noisy - as this will help your tinnitus. If you know any other less well-off tinnitus sufferers you could also help them out. But don't give it to the major tinnitus charities in the UK - the BTA and AOHL - as their research programmes aren't designed to find any long-term cures for tinnitus but simply to keep various types of tinnitus therapists in employment.

 

[Tinniger]

Because tinnitus, in fact, is a serious health condition, which can knock out your social life, deprive of work and prosperity. This is a disability.

I would underline that very carefully.

 

[Greg Sacramento]

Personally, I wouldn't be surprised if it's the US Department of Defense that has the money for tinnitus research.

A few years ago there was a hearing tinnitus study being conducted in my area by the US Air Force that also had a hospital. I couldn't find the study or costs. The DoD has lots of hidden studies and costs. I find out about the study from two guys who took hearing protection off as they entered a store. I don't know if this has any association, but the past Director of the Defense hearing and tinnitus programs was in practice for Sutter Healthcare a mile away.

 

[Starthrower]

Interesting survey @Greg Sacramento!!

How can we make people more involved and informed how each and every donation makes a difference?

Care compassionate giving over research giving always won hands down

This was also my experience with the ATA until the decision back in around 2005 to be a research only organization and the FDL Tinnitus Assistance fund/foundation was axed.

It drew attention from everywhere including specialists.

So...I don't know anymore. I am always more inclined to donate to care fundraisers. I worked with OHSU on this for a while with their Assistance fund. But the university closed down the clinic and took the donations with them.

 

[Tinniger]

The US Air Force would have the wonderful research condition that almost all of its tinnitus sufferers might be victims of noise damage.

This is usually not the case. Less than half of all tinnitus sufferers safely attribute their suffering to noise, including both victims of acute (bang) and chronic noise damage.

 

[Greg Sacramento]

This was also my experience with the ATA until the decision back in around 2005 to be a research only organization and the FDL Tinnitus Assistance fund/foundation was axed.

@Starthrower You have a very good heart - very compassionate.

The ATA also closed a program that listed area telephone numbers for care assistance. In the US tinnitus research is going on which some is hidden by government, corporate and universities, but there isn't enough concern for care giving. Europe and England may be different in this way.

About almost half of those with tinnitus in the USA who hold employment can't afford tinnitus care. Very few health plans will cover hearing aides. Almost none will cover a dental mouth guard. Eye and dental insurance plans have low limitations. Referrals from your primary doctor for care - needs to be given. One isn't able to see other doctors that are not enrolled or have practice rights outside of their insurance plan.

There's plenty of medical research for conditions and disease taking place around the world. Some diseases and conditions such as facial nerve trauma can cause tinnitus. Researchers are in study of the disease/condition that can cause multiple problems besides tinnitus. This is why tinnitus isn't mentioned in title of most research, but if a way is found to treat the facial nerve then those that have tinnitus in association to this may see relief.

In the US care for those with tinnitus could be better. ENT clinic associated hospitals (lower and middle income) have the walls lined with those seeking tinnitus and hearing loss care. Often a basic hearing test is done, but regardless of the outcome you are told to live with it. My own neurologist told me if my wife who made the appointment did not add that I had tinnitus, they would had seen me a lot sooner.

I believe that more focus needs to be done on care of those with tinnitus.

 

[TuxedoCat]

Found this today on BTA's website with other stuff from the conference- https://www.tinnitus.org.uk/2018-atrr-interview-with-tanisha-hammill

Tanisha Hammill is the Research Coordination Branch Lead for the DoD's Hearing Center of Excellence. The military's way of saying she is a research coordinator within the DoD. She mentions areas of collaboration with the UK- a longitudinal study of the impact of hearing loss and tinnitus on service members, a study of fMRI for objective diagnosis of tinnitus and standardizing data collection with NATO partners and monitoring of noise hazard weapons.

Apparently the Hearing Center of Excellence also has a group, looking at pharmaceutical interventions, that have recognized stagnation in the area. Ms. Hammill did a review of all the current evidence for pharmaceutical interventions in animals and in humans. What she found is what I would call a mess. No consistency in animal models, outcomes measured and statistical analyses. She was more polite saying "quality" was a problem making repeatability and verification impossible. I just about flipped out when I read that- this has been an issue in research fields for the past 25 years! Tinnitus research is just finding this out now???

Anyway she talks about other things of interest to this group. It's a good read, but if you choose to look at it, best when you are at your peak for the day and bring your de-coder ring, there are a lot of acronyms.

Bottom line, she says, is to have hope, progress is being made. In the meantime there are behavioral and sound therapies for coping. - TC, stunned

 

[TuxedoCat]

The ATA also closed a program that listed area telephone numbers for care assistance. In the US tinnitus research is going on which some is hidden by government, corporate and universities, but there isn't enough concern for care giving.

I believe ATA just hired a few audiologists to answer calls and put people in touch with providers in their area. BTA seems to do more in terms of outreach to the tinnitus community in the UK with information on the website, on-line forum, information days, and in-person support groups.

I've found it very rewarding to be active in and donate to local charities. Pre-tinnitus I was involved with the local chapter of a national organization that helps homeless children and their families. Many families live on the edge, if the car breaks down or there are medical bills, the rent may not get paid and the family finds themselves homeless. This organization had a case manager so not only could I help out in-kind, I could help out financially and see the money go directly where it was needed. That made a difference. -TC