Backstory: "Cyberphobia" -the Internet and Medical Fears

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The internet is what it is, and one of its charms is its freewheeling nature, but as a source of medical information it must be approached with caution.
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“Cyberchondria” is a real word.  Google (another new word) it and you will get more than 21,000 hits. It is a combination of “cyber” which has come to represent the internet world, and hypochondria. Hypochondria is the disabling concern that a real symptom actually represents some horrible disease, even though it is pretty obvious, at least to others, that it does not.  In order to be a disorder, this concern goes beyond your everyday medical worrying.  Cyberchondria results when a person uses the internet as part of their frantic search for more information/confirmation of their fears. But what kind of  information are they getting?

To cut right to the point, medical information on the internet is generally less than ideal. Put in any common disorder or medical concern for a search term, and disregarding the straight advertising sites you find three basic categories;  superficial information sites, sites for people with what could charitably described as unconventional views on the topic, and commercial search engines that offer scholarly articles at a hefty price. None of these are necessarily all that helpful.

One of the first problems with the informational sites is that they seem at times to be unaware of the requirements of copyright, so a lot of the information just literally duplicates what you have read on another site. Even worse, virtually every site of this kind (including sites run by large medical centers or the US government) is prone to factual errors or out -of -date information.

Websites with unique views may not give a balanced picture of a disorder, or may recommend treatments that are not of proven efficacy.

Finally, perhaps it may seem a bit hypocritical for a magazine to criticize the selling of reprints. But it does seem too bad that the rigorous, in-depth source material on the web is only available to the well-heeled and  that even  providers who don’t  belong to a large academic center may not be able to afford to access this information.

An example of the problem of searching the net for medical information might be one in reference to one of our other articles ("New Shoes"), on multiple sclerosis(MS). Suppose you look at treatments and come up with natalizumab (brand name Tysabri (this magazine has no connection with this drug whatsoever.)) First you read on an investment website that patients developed “different life threatening side effects” which led to the drug being temporarily pulled from the market –actually it was the same side effect, then you read on an informational web site that the risk of getting this side effect (a viral infection that is very severe called progressive multifocal encephalopathy)from Tysabri is 1 in a 1000, which is not true –there is not enough data to make that a valid statement, then you can go to a personal injury lawyer website and read about “patients who had been treated with Tysabri in trials” got dead or got brain damage…well three patients anyway….

What actually happened was this drug was approved for use in multiple sclerosis, and a few months into its use three patients who also had other immune system suppressing things going on apparently got over-suppressed and developed PML, which killed two of them and severely impaired the other. The use of the drug was quickly stopped, but after evaluation and public outcry (for many people Tysabri is better tolerated and more effective than other available treatments) it was restarted with a monitoring program in place. To put this event in perspective, acetaminophen (brand name Tylenol and others) and NSAIDs (Aspirin, Motrin, Excedrin and so on –needless to say this magazine has no connection with these drugs either) are estimated to directly kill 3,000-20,000 people in the US every year. Since some of these kinds of drug have been marketed since the late 19th century, it is not outside the realm of possibility that a million people have died from taking them. Obviously we are talking about trillions of people-years, or people –pills or such and these drugs have many benefits, but a million people! And no one thinks twice about using these, or often prescribing them.

In the case of Tysabri, it was clearly the right thing to do to stop and reevaluate after this unexpected, severe problem came up. Having a monitoring program to prevent people with possible immune system compromise from using the drug is no doubt a good idea.  However, this medication has been pushed to second line status, despite what some would say is clear superiority over the other available options. Are some people losing out to due to misinformation?

Following a single topic through a variety of links is fascinating –there is not space to go over everything that occurs in depth here, but try it – note how quotes and facts are taken out of context from one site to another, or as is especially prevalent on medical sites, how statistics and numbers are misinterpreted or misunderstood. The internet is what it is, and one of its charms is its freewheeling nature, but as a source of medical information it must be approached with caution.


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