Online self-diagnosis can cause surfers to fear the worst
We now shop, network, fact-find and even seek soulmates online. So it's little surprise that, at the first mysterious twinge in the chest or shortness of breath, we self-diagnose by Googling our symptoms. A 2008 study by Microsoft in the US found that roughly two per cent of all web queries were health-related, and a quarter of the participants engaged in at least one medical search during the study.
It also concluded that self-diagnosis by search engine leads surfers to fear the worst. The darkest fears of these "cyberchondriacs" were confirmed by the results, with searches for "headache" resulting in just as many results for brain tumours as benign causes such as caffeine withdrawal. Doctors are, understandably, deeply sceptical about online self-diagnosis. But for every patient mistaking indigestion for cardiac arrest, there's someone with a genuine condition that might otherwise be missed.
Denzil Searle, 38, falls firmly into the latter camp. When he fell ill in 2005, the design engineer from near Camborne in Cornwall initially assumed he had flu. But when the symptoms grew worse he visited his GP, who suspected tonsillitis and prescribed a course of antibiotics. After an initial improvement, Denzil's health deteriorated again. "The symptoms developed from what seemed like a bad flu until I was in constant discomfort and had a stiff neck, muscle and joint pains," he recalls.
Denzil's GP gave his opinion. "He decided that I'd had a viral infection and any symptoms I still had were imagined," he says. "But I've never been prone to psychosomatic illness and hadn't been to see the doctor for years before that."
Feeling frustrated and increasingly unwell, Denzil began trawling the internet for answers. Then a friend suggested Lyme disease (an infection derived from a tick bite characterised by a skin rash, joint inflammation, and flu-like symptoms), which narrowed the search.
"The more I read about it, the more Lyme disease seemed to fit," says Denzil. "But I have a scientific background so I investigated all the other possibilities, like chronic fatigue syndrome and multiple sclerosis. Nothing else matched my symptoms as closely."
Denzil went back to his GP, who eventually agreed to have him tested for Lyme disease, only for the results to come back negative. Then Lyme Disease Action, a support group for sufferers, recommended a Cardiff-based physician specialising in the disease. After a thorough examination he confirmed that Denzil did have Lyme disease and wrote to his GP. Denzil started private treatment on high-dose antibiotics, costing about £800.
"Within a few weeks I felt the benefits. I was on them for a year and have been improving ever since," he says. "What's especially frustrating is that Lyme disease is easy to treat if recognised early. The fact that I didn't get treatment for a year has slowed my recovery drastically."
Franca Tranza, a spokesperson for the British Medical Association, confirms that cases like Denzil's are on the rise. "More and more people are self-diagnosing online," she says. "We are supportive of bona fide web resources like NHS Direct, as they can help inform patients."
But she sounds a cautionary note about less reputable sites. "What we're worried about are quack websites offering miracle cures. And the information online should only be used to complement advice you get from your GP," says Tranza.
The Patients Association echoes her advice. "We are concerned that people may self-diagnose without going to a doctor," says Michael Summers, its vice chairman. "We advise against that very strongly, because online information is often not to be relied upon. It's much better to consult your GP."
However, this advice falls down in cases like Denzil's. Lindsey Middlemiss, a 28-year-old charity director, suffered whiplash in a car crash in 2001. She recovered but a few months later, as she prepared for her university finals, she started suffering from irritable bowel syndrome, joint pain, fatigue and muscle aches.
"Everyone told me it was just exam stress, but I got sicker and sicker," she says.
Lindsey began Googling her symptoms, fearing she was seriously ill. Eventually, she came across fibromyalgia, a chronic condition that affects up to two million people in the UK causing extreme pain in the muscles, tendons and ligaments, and fatigue.
"I found a list of fibromyalgia symptoms on a US site and had almost every one," says Lindsey. "The more I looked into it, the more it fitted. I moved house and got a new GP, marched in and said, 'I think this is what I have', and they agreed."
Lindsey later learnt that whiplash is a common cause of fibromyalgia, because the spinal cord gets compressed, disrupting the nervous system. Although her symptoms are now largely under control, she remains frustrated. "It took me almost three years to get the diagnosis confirmed, by which time I'd lost my job because of my sickness," she says. "If I hadn't used the internet I would still be suffering now."
Online self-diagnosis also helped Jayne Hughes, 42, whose 17-year-old daughter, Amy, suffers from Cockayne Syndrome, a rare inherited disorder. "Amy was born 12 weeks premature and had problems from birth," says Jayne. Various tests were carried out but they were all inconclusive and she remained undiagnosed.
Amy's problems got worse; she developed a stooped posture, a tremor, and her speech and sight deteriorated severely, until aged 14 she was almost unable to feed or dress herself. "Eventually, I found an American website featuring pictures of children with Cockayne Syndrome," says Lindsey. "They looked exactly like Amy, so I knew that was what she had."
Jayne raised money through a newspaper appeal and flew Amy to Boston Children's Hospital in the US, where doctors immediately diagnosed Cockayne Syndrome. "Finally, we proved what was wrong with Amy. She has had extensive treatment since then, but if I hadn't found the diagnosis myself, we would never have had any help from the doctors here," says Jayne.
It seems that, despite the risk of cyberchondria, the internet is educating and empowering a growing number of patients and their carers who feel let down by mainstream medicine – Dr Google helping when their own doctor has not. And that, surely, is a better use of this vast and powerful resource than Twittering or trawling for CDs.