Beware of Things You Read Over the Internet

[Itay]

Over the last months I've read a lot of stuff over the internet. Things that may all be true. Things that may be true and may not be true. and things that may be false.
For an example, the amount of clinical trials that support the laser therapy for the treatment of tinnitus, is staggering. This makes you think that the moment you pick up the laser you are cured. In actuality this is not so dramatic. But some people here have said it do not help at all. this is also untrue. The actual truth is that laser therapy helps some small portion of people with unidentified explanation. Not so bright reality like the one in these clinical trials.
The amount of people with tinnitus on the forums, telling you to wear ear plugs when swimming is staggering. But there is a very weak connection between swimming and tinnitus, so you have to ask yourself whether you want to sacrifice your life quality for this very weak link. especially when you did not get any previous ear infection from water.
The horror stories you can read in these forums that make connections into the strangest things. "I swim and then I got tinnitus".. and you also have to ask yourself whether sleeping with ear plugs when you don't have tinnitus in the first place, can trigger the onset of tinnitus. I've asked a professor ENT who is also a neurologist, and he told me negative, for both. There was once a story about a woman who fell into a mud puddle and died (because she fell into the mud puddle?) - Turns out she had a cancer and that she died because of that, and not because she fell.
I think that on the internet you can read about the worst consequences and stories, and less on the "inbetween" or happier stories. This makes you think that the reality is worse than it is. But actually these occurrences are so rare that only hundreds-few thousands of people from the entire USA have it and decided to post it on the forums. Note that some research papers can also be skewed for the worse or for the better, depending on what they were trying to prove.
comments please

 

[Markku]

Yeah, people can be swayed very easily when they are in distress. Willing to try almost anything that sounds convincing. This creates a huge market opportunity around tinnitus products, and that's why we have so many snake oils to pick from.

One category of snake oils that should be mentioned, in my opinion, are the homeopathic products such as "Ring Stop".

I urge everyone to read these two threads started by our Jim, as everybody should employ this knowledge when considering new treatments:

• How to Spot Pseudoscience
• A Primer on Scientific Testing

About laser treatments...

Study #1: http://www.ncbi.nlm.nih.gov/pubmed/23724264

Results. Over half of the patients (56.9%) had some form of improvement in their tinnitus symptoms. Mild improvement was reported in 33.8% of patients, moderate improvement was reported in 16.9%, and full improvement was reported in 6.15%.

But! The above wasn't a double-blinded, placebo-controlled trial! First thought I had: the results would have been similar with the placebo group, too.

To confirm that...

Study #2: http://www.ncbi.nlm.nih.gov/pubmed/23605244

In term of VAS scores, there seems to be no statistically significant improvement in patients' annoyance, sleep disruption, depression, concentration and tinnitus loudness and pitch heard between the two groups. Transmeatal low-power laser stimulation did not demonstrate significant efficacy as a therapeutic measure in treating tinnitus.

So...

In my opinion the study #1 was useless. Tinnitus very often improves on its own (although the study #1 did include only chronic sufferers, but still), and I bet many of these people in study #1 would have reported similar improvements on their questionnaires were they given a pill or treatment of any kind.


You are also very correct about the ratio of coping tinnitus sufferers vs. those in distress on the internet forums not being applicable to the real life. Most people come to the forums when they are feeling very low and looking for answers, and after they start getting better, they stop frequenting the forums and continue their lives. This is the typical tinnitus case we see.
In a nutshell, if 80% of TT visitors are currently in distress (which probably isn't exaggerating it), the percentage of people in distress (vs. coping) over tinnitus in real life is way, way lower.

This, in turn, gives a skewed impression to the newcomers. However, we're very lucky to have several positive influences on Tinnitus Talk, who contribute daily and try their best to share the fact that, while it may take a while, generally the distress will decrease and quality of life will return to normal.


Also, one needs to be very cautious using Google. A search for "tinnitus + insert any drug, condition, food, or anything here", will probably bring up results that are scary and only strengthens one's suspicions. Even if you find several reports by people, remember that they're often only anecdotal. Common sense should be used. There are oven 7 billion people in the world, of which about 40% use the internet, so certainly there's going to be reports of any imaginable thing (supposedly) worsening - or improving - tinnitus, made it sense or not.


Thanks for starting this important discussion, Itay.

 

[Karl]

The Internet is an amazing thing. I find it interesting that the science fiction writer and futurist H. G. Wells envisioned the Internet a long time ago (in the 1940's?).

I remember the old days before the Internet and computers. Using a typewriter was pure torture. One mistake and you'd have to type the page over or use White-Out.

The need to beware of things you read about medicine cures wasn't much of an issue in the past. Before, say, 1980, medical journals were the only available resource for legitimate information. Computers and the Internet have blurred the field of publishing, liberating writing to a much broader audience - including snake oil salesmen. Today we have sort of schizophrenia of resources available to us: Legitimate medical journals (which usually only doctors read), company websites that are hyping their product, blogs by amatuers and scams.

It's great that we can express our ideas and share with people all over the world. But there is also this problem you mention, that there is a lot of crap being written out there. Anything goes...everybody can have an opinion...all ideas are equal...right? This is the flip side of having more options available to us. It can be hard to decide what is right.

It's truly amazing how easily we can get information on anything using the Internet.

 

[Hudson]

I think some good thoughts have been said in this thread so far.

It is very important to realize that for many of the people who have tinnitus, it is not a big enough deal that they would post on line about it. Whether that is a testament to the severity of their tinnitus, their attitude in general, or their coping skills is anybody's guess. The numbers don't lie though, and there are not millions of people posting on tinnitus forums. Perhaps a few thousand, and even at that, most are not recurring posters in the long term.

I honestly suspect that as many people feel better they no longer post online or read about tinnitus information. Maybe they are frustrated with the lack of knowledge or solutions, and see no point in it. But I tend to think it is the former rather than the latter. I know that it has happened to me at least once. I habituated to tinnitus, and literally stopped reading about it online after a while due to boredom, and the fact that I was moving on and becoming interested in other things.

As far as the internet goes, I have been on it for most of my life. I have learned that a user has to generally weed through a lot of crap to get to the good stuff, and being able to find useful information or solutions to problems on the internet can be a skill in and of itself. That is why a resource like TinnitusTalk is very valuable to me. I value what I read here because I think it is some of the best information I've read from Tinnitus sufferers themselves, and even better than some doctors I've spoken to. What drew me to TinnitusTalk is the friendly nature of this site and how well it is set up. It looks professionally done, and there are good posters here. People are supportive, and negative conversations do not often take place here.

The internet does provide a nice resource for patients to be more proactive with their health and knowledge of their conditions than in the old days. In those days, a person was more or less reliant upon their doctor's opinion, unless they had time themselves to comb through libraries or medical journals manually. However, picking out the bad apples from the good on the internet is almost always a tricky deal and it requires some research in and of itself.

Naturally I have been to other forums concerning tinnitus that shall not be named. What I found all too often was nearly the same attitude that one gets from an unconcerned doctor: "Go home and live with it." While habituation and moving on with life are important tools for coping with tinnitus, I honestly hate hearing that kind of statement. I have read posts along the lines of "Tinnitus doesn't need a cure or treatment, the cure is right in front of you. It's yourself, learn to live with it." To me that is simply blaming the victim. Moreover, it trivializes their suffering, almost coming off as making fun of someone for what they are going through. While I feel that forums should be an open place for discussion and input, statements like that only hurt the very people the forum is intending to help.

Tinnitus is not some passive thing, like the choice an alcoholic makes if he picks up a drink. We get no choice about whether the sound is there. To me saying that the "problem is me" is like saying that a person with progressive blindness should just "learn to live with it" and that they themselves are the problem. Both are terrible conditions. We have no good treatments for most of the various causes of tinnitus at this time. Habituation very often is the choice a person must make. But I will never blame them for that or belittle their struggle. I am constantly reminded of the quote from Friedrich Nietzsche: "He who has a why can endure any how." Being supportive, yet maintaining a realistic amount of hope is not a bad thing at all. In fact I think it is a very healthy thing.

Sorry for the rant, all!

 

[mick]

I find it much easier to separate the wheat from the chaff when the source of information is the web than when it is a discussion with my doctor in an examination room. For the most part, I have insufficient contact with any doctor I've ever seen to develop a real sense of whether he knows what he is talking about or not. I feel the need to cross check most everything they tell me, and I can tell you I've found a lot wrong with what doctors tell me. Even more important sometimes is whether they know me well enough to accurately interpret my questions or concerns. A 5-20 minute appointment every now and then does not make for good communication dynamics.

There is a tremendous amount of reliable information on the web if you stick with information supplied by reputable sources: medical journals, universities, government web sites, mainstream magazines and newspapers, etc. There is usually sufficient meta data associated with that info, and the opportunity to review it on your schedule, to vet to some degree the reliabilty of the information. I don't find that to be the case with doctors. You get only a few minutes to get a sense of what sort of person they are, and there is very little else to rely on other than a piece of paper that says he graduated from medical school and maybe the opinion of someone else who is equally in the dark as you. That has always struck me as weird. We so often put our lives in the hands of people that, when you get down to it, we don't know any better than a stranger walking down the street.

Just like the commercials on TV, whenever there is money attached to things and hype trying to draw you in, then you should be be wary. The same principles apply on the web.

I think crowd sourced information is often pretty reliable and a great deal of the "non-professionally supplied" info on the web is of that nature. Crowd sourced information is one thing the web excels at. The shear quantity of people reviewing the information gives is credibility (not absolute of course). Wikipedia is a great example. So is Tinnitus Talk. You just need to make sure the crowd has a common motive, is big and varied enough that its members can cross check each other, and that there is plenty of opportunity for members of the crowd to openly discuss things. I, like many others here, believe TT is a tremondous resource. I think it is a more accurate, comprehensive, reliable, and practial source of information than the vast majority of medical practitioners on the planet with regard to tinnitus. Having said that, I think any reasonable person would not, and should not, fully vest themselves in everything they read here. By the same token, you cannot count as gospel everything you read in a medical journal either.

The bottom line is I feel pretty comfortable with the overall quality the information I find on the internet. One just needs to apply the same common sense and the same precautions that you apply in your everyday conversations with people you work, socialize, and live with, and that you apply to TV, radio, or any other media outlet.

 

[Davekyn]

Anything that offers quick results with lots of testimonials and bla bla bla ... I defiantly stay away from!