Barry’s muscles had suddenly started twitching. As the weeks passed, it seemed to be getting worse. So Barry did what many of us would do and Googled “muscle twitching”. To his horror one of the first results was a site about amyotrophic lateral sclerosis (ALS), a rare and fatal brain condition (which lists "muscle twitching" as a symptom). Barry was convinced that he had somehow contracted ALS, and headed straight to his doctor’s. After a full examination, his doctor diagnosed benign fasciculation syndrome (BFS), a medical name for a number of non-threatening symptoms that include twitching. But Barry didn’t believe him, and continued to read all about ALS. The fact that the disease is incredibly rare didn’t enter his head. As Barry became more and more anxious about his health, his partner decided to do something about it. She Googled BFS and came across a site called AboutBFS.com. And there she found information, not only about BFS, but about ALS as well. It seemed that a lot of people with BFS symptoms were worried that they had ALS. When Barry read the information, he was reassured, and he was also able to join a forum for other BFS sufferers. But not everyone is so lucky. Some people, after self-diagnosing on the internet, remain convinced that they have some very rare terminal illness. They continue to search for more information, and they convince themselves that they have all the symptoms. Even after extensive medical tests, their doctors can’t convince them otherwise. There’s now a term for it, cyberchondria. A typical cyberchondriac searches on the internet for a health problem, for example a headache, and then chooses the most serious possible diagnosis, a brain tumour. This worst-case scenario may come very high up in the search results and the headache sufferer mistakenly assumes that this means it’s a more likely reason than, say, caffeine withdrawal. In fact caffeine withdrawal is a very common cause of headaches, but not much is written about it compared to brain tumours. That’s the problem with Dr Google – the search results reflect popularity of the topic – and the more serious illnesses tend to have far more articles and papers written about them. Cyberchondria is growing but help is at hand. The website AboutBFS.com was set up by an American who, after being diagnosed with BFS, discovered that there was very little information about this condition on the internet. He wanted to help fellow sufferers and his site has become a haven for former cyberchondriacs who discover that they are not alone in fearing the worst. A Swiss organisation, the Health on the Net Foundation (HON) aims to help cyberchondriacs by running the Medhunt search engine, which only pools results from trusted sites. And they hope in the future to develop a smart search engine which provides results based on likelihood rather than relevance. But until then doctors need to be aware that patients have probably already consulted Dr Google, and provide guidance on how to use the web sensibly |
