Researcher

I'm a psychologist (Ph.D.) with a background in math (and physics). I studied sensory processes, perception, neuroscience and cognition. In my career I have managed and performed research and consulted on a wide range of problems. A special interest is human inference and decision making. I was the CEO of research firms for most of that time. In recent years my work has centered on the interpretation of complex scientific and statistical data. I have consulted on inferences and major decisions involving incomplete or uncertain data, for both private and government clients.

I developed severe tinnitus at the end of 1989 for reasons that are unknown.

Although tinnitus was a severe problem at the outset, it is no longer a serious concern to me, though it is actually louder now than at its outset.

Jim Chinnis

 

Good to see you here, @jchinnis.

Given your very impressive background, not to mention the fact that you are some one whom I personally hold in extremely high regard, would you mind elaborating on the following statement of yours that appeared elsewhere:

"If one reads through the posts on Tinnitus Talk, the frequency of posts that support or fail to question scams and discredited tinnitus treatments is almost breathtaking."

I love this board - but I happen to agree with you fully, and I would like your spin on it.

Thank you.

Stephen Nagler

 

Hi, Stephen.

A good example is the discussion of T-Gone. I think that many of the "treatments" are given a rather wide berth. Partly, I think most people (99% of the world population) doesn't appreciate the real meaning of, say, a randomized controlled trial, when basing treatment choices instead on an observational study showing a correlation or on nonsense "science."

Does caffeine consumption really reduce the chance of developing tinnitus, and might it cure it? You know how to interpret the research, of course, but most posters don't.

Does stem cell treatment in Thailand represent an opportunity for a cure? You can infer my take on that.

Happy to address your question.

Jim

 

Thanks, @jchinnis. Appreciate the response.

My view is that no board is perfect, and you can't fix the world all at once.

As I see it, the civility and tolerance that pretty much define TT trump everything else.

Scams can be challenged. Intelligent people can be taught to think critically. But there is no fix for miscreants who for all intents and purposes live to make others feel uncomfortable. Which is why this board has become my new home.

I have taken a sig line. See below. It speaks to me. I hope it speaks to others.

All the best -

Stephen

 

Civility is a must. This board is off to a good start on that. Whether it can also help sufferers distinguish between nonsense and science remains to be seen. Certainly one of the worst problems tinnitus sufferers face is the army of charlatans and scammers who see them as easy targets.

I do wonder though if civility might be more important to you, as a clinician here, than it is to a tinnitus sufferer who is trying to sort out everything while under terrible stress. Certainly you don't need a lot of help in sorting through research or treatment claims, but most tinnitus sufferers do. The tradeoff between civility and "calling a spade a spade" may be different for them than it is for you.

(And "calling a spade a spade," even if done with every effort toward civility, will nevertheless offend many...)

Jim

 

Agreed.

Stephen

 

Actually, there are a lot of us here reading peer reviewed scientific papers from the NIH, Harvard, etc. I agree that some people, in desperation, have eschewed good reason...most likely due to fear, frustration and agony. I don't blame them. As an engineer (who has also studied biochem in undergraduate studies) I appreciate the effort in evidence based processes.

However, science and medicine are woefully behind in almost every aspect. We can calculate complex matrix math on a small processor with a billion CMOS transistors but we scratch our bum when it comes to getting one bloody stem cell to grow into a specific cell type.

This huge disconnect in the area of science is mainly due to an over indulgence (by healthy people) to pump money into missile systems, smart bombs and drones. And let's not forget that Facebook gets billions of dollars for absolutely no contribution to technology whatsoever. But people pump billions into useless marketing venues. Meanwhile, back at the fort, mrs scientist gets a few thousand...maybe enough to buy some petre dishes and run a few cell experiments instead of thousands of experiments. The NIH got its budget cut and will most likely produce some more "me too" drug research.

So, you wonder why people are desperate and will try anything....well hell, let's start putting science to work and (crowd) fund it so they can see it working for a change....or ...we just pump billions more money into Facebook so we can push some more ad space in front of our poor anaesthetized masses. I vote for more money for stem cell and gene therapy and many other great research areas that we need to live a healthier life.

 

JohnG: Well said. My only quibble is with the way we are trying to fund research. In the US, the NIH used to be the crown jewel in terms of research. Now government funding is viewed as suspect, and private funds rule the day. But private funds flow into new iPhone apps and not basic research in any field whatsoever.

There was something right about basic research (which is still what we mostly need in tinnitus) and government funding. Funding by "crowds" and billionaires isn't going to cut it.

 

I agree. Unfortunately, that great institution, called our government, that put a man on the moon, and now seen as the evil doer since the Reagan days, is a dead end. Unfortunately, we are stuck with Google funding the "longevity" project and crowd funding. The government is broke spending on two wars for the next twenty years at best. So where does that leave us? Big pharma (yuk) another useless "me too" drug. Crowd funding and billionaires it is ...like it or lump it. Not much we can do.

 

What I think most people do not realize is how much "basic" research contributes to the advancement and innovation needed to drive scientific and economic expansion. Pharmaceutical companies will (and have) hesitate to fund treatments for hearing loss and tinnitus. Why? Not because there isn't a huge amount of money to be made, but because much of the basic research has not been funded. That's where institutions like the NIH are incredibly important. They provide money to researchers all over the country who are doing work that often translates into a great economic return for the country. I cringe every time I hear on the news about how politicians are ridiculing a scientific study - frog reproduction was a recent example - and saying it's a waste of money. In the past, it has been some of the simplest and what would seem to be the most obvious studies that have been truly groundbreaking.

Our initiative, the Tinnitus Network, is going to aggregate patient experiences and reviews. It will serve to help weed out the snake oil treatments and scams that flood the internet. Coupled with opinions contributed from clinicians and researchers alike, we hope to be able to deliver a product to a tinnitus patient that truly uses the power of the internet to filter the noise of the world to provide answers and help for those in need. If it is the location of the nearest clinic that specializes in tinnitus treatments, support groups, online support, tools for creating custom masking sounds for themselves, whatever the need may be as it arises, we hope to provide that.

We obviously do not intend to take the place of medical consultation. Our aim is patient empowerment through a centralized location for knowledge. We live in the information age, there is no reason a patient's knowledge of tinnitus should be limited to the pamphlet from the ATA the ENT gives you.

Regarding the concern about how we have treated people trying various treatment methods, that is because we keep an open mind. If a user has gone the path of getting intratympanic injections of lidocaine and dexamethasone at the Shea Clinic in Memphis, we'd like to hear what their experience was, and what their opinion of the treatment was. They will not be ridiculed or outcast for having tried a treatment that maybe their primary care physician did not recommend to them. Not only has that person taken the time to reach out and share their experience, which enriches our own body of knowledge, they are also a person who is struggling often and could use support.

If a person posts a thread about a stem cell treatment trip to Bankok, we investigate the validity of that post and what the person is saying. Many of us have been around on the internet a long time, have posted on many quality boards unrelated to tinnitus, and can spot trolls, scam artists and fakes with ease and some technological tricks. If someone is being sincere in posting their experiences, that user's experience will be taken seriously and be treated with respect; because as I said earlier, it only adds to our body of knowledge.

Helping others with tinnitus has become my hobby, and my passion. If the way I can do that is lend some interpretations of research papers, or help to contribute to a wonderful community such as this at this time, then so be it. I would like to do more, and have applied for some doctorate programs at different schools who have PIs working in what I consider to be promising areas of research. Maybe that's the next step in what I can do.

Until that time, I donate my time and money to building this community and reaching out to people who post here.

"How wonderful it is that nobody need wait a single moment before starting to improve the world."

I agree. I start by supporting others when in need, and reaching out for support myself when discouraged.

Welcome to Tinnitus Talk and please continue to lend your expertise, as it is very much appreciated.

 

jchinnis, you wrote that this board is off to a good start on civility, but whether it can also help sufferers distinguish between nonsense and science remains to be seen.

Boards don’t help sufferers distinguish between nonsense and science. Knowledgeable people do that, one post at a time.

I’d argue that calling a spade a spade and civility are not mutually exclusive and that civility is very important to the majority of people who contribute to Tinnitus Talk. Dissuading someone who is desperate with tinnitus from a scam or discredited treatment they feel emotionally invested in has as much to do with being responsive to a single human being as it does with being conversant with the facts and being able to explain them.

here2help

 

Hudson, your discussion of basic research is just right.

From what I am hearing here, I am at a bit of a loss to see how a website (a "lay" website, as far as I can tell), is going to be able to guide people to better care. As often as there will be a presumably well-meaning and effective person such as here2help (post immediately above), there will be a well-cloaked clinician hawking his wares or even a paid pusher of a nonsense treatment. I've seen them for years, and they are talented and will be here. Add that to a fairly low level of education in science all around, and I can't see a crowd-sourced approach working.

I send most of my tinnitus-related time pressing for more funds for tinnitus research, evaluating proposals, meeting with a key government official or member of Congress, and the like. I haven't given up on the people and the government (not just in the US) restoring support for science, medical research, and science education.

Here2help, I respect your one-on-one efforts. And I try to help individuals in my own way, too. That's one reason I am here.

Jim Chinnis

 

@Hudson and @here2help

I would hasten to say that I, in fact, was burned by a so called "MD" clinician. I am finding more and more clinicians to be quite obtuse in current scientific research and new and coming cures. From this point on, I will determine my destiny in regards to my own health. I'll be damned to have somebody "filter" it as @here2help implies. I am always suspect of so called "experts" unless I read some of their research articles/patents or presentations that have been peer reviewed.

It smacks of paternalistic nonsense to say that we don't need boards like this because we are just to stupid to know what is good for us unless some "expert" filters it for us. Nonsense!!

Yes, there are some lay people. We can help them by presenting evidence on this board that is sound. But because of this board, I learned about AM-101 clinical trials ....and NO doctor even knew about it in my area. And if it works, I will be so very grateful to the information on this site. So very grateful.

Second, someone on this site pointed me to the work by GenVec using gene therapy to splice in the atoh1 gene into supporting cells. Not even research at Harvard knew of this work by Novartis and Genvec. That gives me hope since Phase I trials are starting this year.

If you want to filter.... go filter your coffee. But I want information to make up my own informed decisions!

 

John you lost me on this one man. I don't see how the knowledgeable people here2help refers to had to be medical professionals. I've had help from many people on here who were not. I agree with everything else you say, with a condition like t you have to be suspect of what out there and we're pretty up to date with the treatments being developed for t

 

I'm referring to the posters above coming down on this site for not filtering out all the charlatans. You are right, medical professionals should not fall under that category of expert, like Ph.Ds and real scientists (they are just body mechanics) But I want to make clear that I am very circumspect of any "expert" that wants to filter without knowing what they have published that qualifies them. It seemed to smack of elitism without giving credit to those of us that do our homework and need sites like this that are unvarnished at times but definitely not filtered. I don't mean to be slamming anyone except on that on particular point...having been burned by experts that I gave my unrelenting trust to, I won't be doing that ever again.

 

Everyone here makes his own decisions. Everyone does. But a lot of people don't realize they are making decisions.

And making good decisions is a lot harder than people think.

Patients make treatment decisions when they decide to do their own research on the web and choose their treatment path. They make treatment decisions when they choose a physician or acupuncturist or homeopath.

And there isn't any escape from the decision making.

I saw a study just the other day that looked at the treatment of stroke victims immediately after a stroke when they were seen at the emergency room. Emergency physicians tend not to use "clot-busting" drugs that often, because doing so can kill the patient with a brain bleed. But when asked what they themselves would like in the way of stroke treatment, they almost universally wanted a clot-busting drug.

Skipping the drug means a higher chance of surviving, but with impairment, likely a bad impairment.

To the ER docs, their decision was to reduce the chance of their killing their patient. But if they were the patients, they would prefer the drug and the resulting increase in the risk of death in return for less or no impairment should they survive.

This isn't just a situation that occurs when a patient is impaired or severely stressed, but it is worse then.

(I know a little about the background of this, because I once co-authored a research paper on treatment with "clot-busters:" http://www.ncbi.nlm.nih.gov/pubmed/?term=Fryback, Chinnis, Ulvila )

It turns out that judging the credibility of a reported finding, or of someone who reports a finding, or the suitability of a surrogate decision-maker isn't so straightforward. And many, maybe most websites seem to take advantage of that in one way or another, either by design or because of factors beyond their control.

But in the final analysis, each of us makes his own decisions.

Jim

 

I don't exactly think that site should "filter out" all the charlatans. I don't think any site such as this can really do that.

I am puzzled, though, by the idea that the Tinnitus Network is going to essentially crowd-source the expertise to rate treatments, research, providers, etc. I don't think that the credibility of treatments etc. can be established from any sort of voting or crowd-sourcing.

Is that clearer?

 

Very good Jim. At the end of the day, we decide what risks we are going to take. The data can point us to the risks and benefits but we have to decide what risks we will take given the benefit. A "lay" person may trust that doctor to make that assessment (in an emergency they may have no choice). But in chronic cases of health, where medicine is woefully deficient, we may try some therapies with limited results if the risks are low. That is our decision and our money. What we can do is show links to research here that point people to the right modalities that can offer some help to chronic illness without health risk and let them make a decision. I really hate when many good potential treatments are poo pooed because big pharma did not make it.

 

Yeah...I'm not sure of that either...I am just happy with this site as it is. It seems to be duplicating what we have here. But I also appreciate getting knowledge to people faster than the snails pace of clinicians. Have you been to an ENT lately??? It is a complete waste of time and money. I would not have known about the clinical trials for AM-101 if it weren't from this site. However, if it worked for me, it may not work for you. Only the published results of placebo and the double blind ANOVA data can prove statistical improvement. But this site could post said results where we can see it.

 

Having witnessed the problem up close and personal wearing the hat of a severely incapacitated tinnitus sufferer as well as subsequently wearing the hat of a compassionate and hopefully well-informed tinnitus clinician, it seems to me that it will take a truly Herculean effort to accomplish what the Tinnitus Network hopes to accomplish and do it responsibly. I do hope that the fine work of this board does not suffer as a result. That would be a shame.

Best to all -

Stephen Nagler

 

Thank you, Steve. That clarifies things quite a bit.

It sounds like like you will be using a weighting system to crowd source evaluations of or inferences about research, treatments, clinicians or whatever. That isn't easy, even to get a rough algorithm working (and validated). I've helped develop Bayesian inference models to do that sort of thing, but clients paid thew contractor big bucks for them. Simple models can credit unreliable or biased sources despite best efforts to avoid that. If your goal is to "end up with a reasonable, representative view from the general public," it's certainly easier.

I'm still not clear on much of what the TN will be doing. Plain English reviews of research will need to be written by researchers. If you look at any number of recent news accounts of research, you will find more failures than successes in actually capturing the meaning of the research. The Cochrane Collaboration is a great and trusted resource, but it doesn't cover individual studies or clinicians and the like and certainly leaves out all the newer things being explored.

So you have chosen a tough goal, IMO.

Anyway, this is "my" Introduction thread, and I wanted to lay out my background and views, not turn the thread into an evaluation of either Tinnitus Talk or the Tinnitus Network.

I look forward to playing a constructive role here in Tinnitus Talk.

Jim

 

I don't think Bayesian statistical modelling or even a very good machine learning algorithm will be able to vet sundry user input and verify user's credibility to any great degree. I think you can present material and discuss it and get user experiences. That is still helpful, however. Clinical trials and treatment regimens are not known by many clinicians and we need to get the suffering to the clinicians that are in the know. Any site that can focus attention on these clinicians, that have credibility, is a needed service. I don't think they need to have the on-line version os JAMA.

 

But anyway. Welcome and please contribute research papers that elucidate some progress in related research. I welcome any papers you have written regarding modelling with Bayesian statistics. I also have R at home and happy to grind some numbers to verify results I might question :=)

Cheers,

John

 

[With apologies to Jim, since this thread is becoming a bit more than he had intended ...]

John, how would you propose identifying those clinicians who are "in the know?"

I mean, you live in BC and likely you are aware of Glynnis Tidball in Vancover. Glynnis is wonderful! In my opinion she is a clinician very much in the know, but some folks might disagree with that assessment. In fact I happen to believe that I myself am a clinician in the know, and I am 100% certain that some folks will disagree with that assessment. Strongly!

I love the idea of developing a mechanism for identifying clinicians in the know so that the suffering can access them. But it's one helluva moving target. Especially since a lot of the identifying will presumably be done by well-intended folks who are not all that in the know themselves. Not to mention those who are indeed in the know but who disagree.

Stephen Nagler

 

It all is a moving target isn't it? Yeah..I've heard of her but here is the catch. To get into the Tinnitus Clinic in BC takes over 6 months....no that is not a typo. BC is such a slow medical system it will be 6 months to just see an ENT!! Which is why I went to Seattle just across the border. But I was too late for treatment with corticosteriods thanks to the health care system here.

I would not know what metrics to use to evaluate clinicians that would be indisputable. Patient input would be specious at best. So I guess I'd let my judgement when I get to their clinic decide.

 

Maybe there's a need for that too. The Tinnitus Network I'm imagining is going to make a lot of the resources this board already provides easier to access, especially with how information is obtained. As great as forums are, they are only useful to a point for collecting and dispersing knowledge. Tinnitus Network will make this data easier for people to find. I imagine that there will be some other "killer app" features included in the site that will make it even more wonderful. This site doesn't sound like its supposed to replace anything, just supplement those who are looking for help/tools/information.

We are all watching the research go on around us. Until we have access to medical technology, what we can do is simply collect information and work together on "solving" the problem, which is that people, in general, feel there is no end in sight for tinnitus, when really there is, but given the comments I've seen on this forum and other people who have the condition, it's fair to say its getting to the point where the people who have it are stepping in to contribute some. This is a great contribution from Markku, Steve, and the rest of the staff. It's purpose is to help many - I've never seen a downside of a project like that. We need more technologies and resources that provide help to many. Give back to the planet in any way you can

 

Convenience is in my opinion not a particularly great criterion for identifying a clinician in the know. That's a good example the type of stumbling block I'm talking about in trying to identify clinicians in the know!

Stephen Nagler

 

I wasn't referring to convenience my friend..I can't even see a bloody specialist when I needed them the most. As for which doctor is good, ...when I actually get to see them, is what I was talking about. Convenience is nice but I would fly myself to Tim buk tu if I knew there was a damn good clinician there. Money and time are great to conserve but when you suffer...ah the hell with it.

So who is good? I don't think there are easy metrics for this. But right now, my focus is on getting into the clinical trials for AM-101 before it is too late. I already squandered my precious time getting help and missed window after window. But hopefully not this time.

Cheers,

John