Cyberchondria: The perils of internet self-diagnosis

It's all too easy to consult Dr Google when we're feeling under the weather – and all too easy to convince ourselves we're seriously ill

Catherine was worried. For weeks she had been experiencing twitching in muscles all over her body. So, she did what millions of us would do: she Googled "muscle twitching". Do the search yourself to see why Catherine's worry quickly turned to terror. Among the results are a page on a university website about Creutzfeldt-Jakob disease (CJD), the incurable and fatal brain disease (which lists "muscle twitching" as a symptom), and a site about amyotrophic lateral sclerosis (ALS), another rare and fatal brain condition, also known as Lou Gehrig's disease.

Next stop: Catherine's doctor. But just as quickly as she beat a path to his door, he ruled out anything serious – after all, the chances of contracting CJD or ALS are vanishingly small. Instead, he diagnosed benign fasciculation syndrome (BFS), a medical name for a number of non-threatening symptoms that include twitching. But that wasn't enough for Catherine, who Googled "BFS" when the shakes got worse. She ended up on a forum at the site AboutBFS.com.

"New member ... terrified ... mouth/speech problems. PLEASE help", she posted last month. "I have been living life as if I was going to die in 18 months ... I feel like everyone thinks I'm crazy." But Catherine is no more crazy than she is terminally ill. She is, however, a "cyberchondriac", a term that describes a growing number of otherwise rational internet users who, when they present their symptoms to "Dr Google", latch on to the worst "diagnosis" thrown back at them.

Cyberchondria has been around for almost a decade, but a recent study is the first to systematically investigate it. Eric Horvitz and Ryen White, scientists at Microsoft's research division, analysed the internet behaviour of a million surfers around the world, and carried out a survey of more than 500 Microsoft employees, to discover how the internet is giving many of us an acute case of the heebie-jeebies.

Let's take brain tumours as an example. They are mercifully rare, developing in fewer than one in 50,000 people (0.002 per cent of us). Yet Horvitz and White's research shows that 25 per cent of the documents thrown up by a web search for "headache" points to a brain tumour as a possible cause. ALS, which is the form of motor neurone disease (MND) from which Stephen Hawking suffers, is similarly rare; MND affects fewer than one in every 14,000 people (0.007 per cent of us). But again, as Catherine found, the proportion of websites listing it as a cause of twitching is significantly higher.

"The problem starts with bias," says Horvitz, who also has a medical degree. "Nobody is excited to write about caffeine withdrawal and its role in headaches, but brain tumours – that's much more interesting. Search engines aren't savvy about this bias – they are programmed to generate results relevant to the query, not the person making it." Apparently unaware of the disproportionate level of attention given to scary diseases, people frequently relate search rankings with likelihood; if a search for muscle twitching reveals three results near the top of the page about ALS, then, as Horvitz says: "It's, 'Oh my God, these twitches mean I've got motor neurone disease – get me a wheelchair!'."

Why are so many of us so willing to believe the skewed result of web searches? One problem is laziness. A recent American study by the Pew Internet Project revealed that while eight in 10 of us use the internet to look for information about our health, about the same proportion – 75 per cent – do not check the source of that information or the date it was created. The rest comes down to psychology. Horvitz points to a famous fallacy known as "base rate neglect", where evidence makes people believe something is relatively likely to happen, despite the real chances being very low. "If a healthy person under 35 has chest pain, it is unlikely to be related to the heart, but because there is so much on the web linking the two, they forget the low background probability."

A similar effect playing on the minds of cyberchondriacs is something called "availability bias", which happens when people make predictions of likelihood based largely on what comes to mind. A classic example is the smoker who thinks they're safe "because my granny smoked 20 a day and lived to 96". Likewise, the net surfer who sees 100 results for ALS lets that skew their prediction of their own risk. "The same thing happened before the internet," Horvitz adds. "I remember getting worried when I was studying medicine. According to one study, up to 75 per cent of first- and second-year medical students end up thinking they have one significant yet imaginary disease based on what they're learning – some call it 'medical school-itis'. To some extent, the internet is making first- year medical students of us all. The problem is that often the information isn't as good."

Surely the only cure for cyberchondria is to steer well clear of the internet? Not according to Pauline Brimblecombe, a GP who works near Cambridge. She believes the internet has made patients "more interested in their own health and therefore more likely to look after themselves". She adds: "If my patients Google something and come rushing in with bits of paper, at least I know what they're worried about and can reassure them." Horvitz, too, believes in the power of the web. "It's an extraordinary resource for healthcare information," he says. "We're talking about a stone with a rough edge here, not a fatal flaw."

One man trying to polish that stone is John Voorhis, an IT consultant from New Jersey. When he developed muscle twitches like Catherine's, he was also scared. But, unlike Catherine, Voorhis was reassured by his doctor, who also diagnosed him with BFS. Then, alarmed by the lack of information about his condition – and the tsunami of online horror stories – he launched AboutBFS.com, the site that allayed Catherine's fears. "A lot of people come to the site thinking they have ALS," Voorhis says. "Now they find a community of people to reassure them. I can't count the number of times I've had emails from people saying the site has saved their marriage or even their life."

Voorhis is helping one group of cyberchondriacs, but a Swiss organisation is trying to reach them all. The Health on the Net Foundation (HON) started life in 1995 with a meeting of 60 scientists in Geneva. "They realised very early on that the internet would be used not only by researchers and scientists but also the general public," says Celia Boyer, HON's executive director. "They also identified that due to the nature of the web – anyone can put information online – it could be a dangerous place to get health information."

HON has set up a code of conduct, which requires the 6,500 sites that have signed up to it to display information responsibly and inform readers about its purpose and source. It also runs Medhunt, a search engine that pools results from trusted sites. "We are also developing the next generation of search engine," Boyer adds. "We want to create a kind of filter you can add to Google or other sites that only presents results from approved websites."

Horvitz goes one step further and prescribes smart search engines that realise when someone is tapping in symptoms, automatically switching to a "diagnostic mode" in which users are asked their age and other information to provide results based on likelihood rather than simply relevance. But until "Dr Google" wises up, Horvitz says the responsibility to reassure the growing number of cyberchondriacs panicking at their keyboards lies with GPs. "Doctors need to work with patients and realise they are going to go to the web before they come in," he says. "They need to provide guidance on good websites and put themselves in patients' shoes so they know what's out there – good or bad."

Medical sites: Who to trust

Medhunt

Run by the Health on the Net Foundation, this search engine pools results from websites that comply with its strict code of conduct. www.hon.ch/MedHunt

NHS Direct

Choose your symptoms from an A-Z list or pick a body part to narrow the search for a possible cause. The site will often direct you to your GP. www.selfhelpguide.nhs.uk

Patient UK

Comprehensive source of information run by doctors. Read leaflets, find support or even book appointments and order repeat prescriptions. www.patient.co.uk

WebMD

American site with exhaustive content designed to help you manage your health and find help, plus a smart symptom checker. www.webmd.com

Life and Style
ebookNow available in paperback
ebooks
ebookPart of The Independent’s new eBook series The Great Composers
  • Get to the point
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Ashdown Group: Senior Accounts Assistant - Accounts Payable - St. Albans

    £26000 - £28000 per annum + benefits : Ashdown Group: Senior Accounts Assistan...

    Ashdown Group: Treasury Assistant - Accounts Assistant - London, Old Street

    £24000 - £26000 per annum + benefits : Ashdown Group: A highly successful, glo...

    Recruitment Genius: Installation and Service / Security Engineer

    £22000 - £40000 per annum: Recruitment Genius: This company is part of a Group...

    Recruitment Genius: Service Charge Accounts Assistant

    £16000 - £18000 per annum: Recruitment Genius: Are you a a young, dynamic pers...

    Day In a Page

    General Election 2015: Chuka Umunna on the benefits of immigration, humility – and his leader Ed Miliband

    Chuka Umunna: A virus of racism runs through Ukip

    The shadow business secretary on the benefits of immigration, humility – and his leader Ed Miliband
    Yemen crisis: This exotic war will soon become Europe's problem

    Yemen's exotic war will soon affect Europe

    Terrorism and boatloads of desperate migrants will be the outcome of the Saudi air campaign, says Patrick Cockburn
    Marginal Streets project aims to document voters in the run-up to the General Election

    Marginal Streets project documents voters

    Independent photographers Joseph Fox and Orlando Gili are uploading two portraits of constituents to their website for each day of the campaign
    Game of Thrones: Visit the real-life kingdom of Westeros to see where violent history ends and telly tourism begins

    The real-life kingdom of Westeros

    Is there something a little uncomfortable about Game of Thrones shooting in Northern Ireland?
    How to survive a social-media mauling, by the tough women of Twitter

    How to survive a Twitter mauling

    Mary Beard, Caroline Criado-Perez, Louise Mensch, Bunny La Roche and Courtney Barrasford reveal how to trounce the trolls
    Gallipoli centenary: At dawn, the young remember the young who perished in one of the First World War's bloodiest battles

    At dawn, the young remember the young

    A century ago, soldiers of the Empire – many no more than boys – spilt on to Gallipoli’s beaches. On this 100th Anzac Day, there are personal, poetic tributes to their sacrifice
    Dissent is slowly building against the billions spent on presidential campaigns – even among politicians themselves

    Follow the money as never before

    Dissent is slowly building against the billions spent on presidential campaigns – even among politicians themselves, reports Rupert Cornwell
    Samuel West interview: The actor and director on austerity, unionisation, and not mentioning his famous parents

    Samuel West interview

    The actor and director on austerity, unionisation, and not mentioning his famous parents
    General Election 2015: Imagine if the leading political parties were fashion labels

    Imagine if the leading political parties were fashion labels

    Fashion editor, Alexander Fury, on what the leaders' appearances tell us about them
    Phumzile Mlambo-Ngcuka: Home can be the unsafest place for women

    Phumzile Mlambo-Ngcuka: Home can be the unsafest place for women

    The architect of the HeForShe movement and head of UN Women on the world's failure to combat domestic violence
    Public relations as 'art'? Surely not

    Confessions of a former PR man

    The 'art' of public relations is being celebrated by the V&A museum, triggering some happy memories for DJ Taylor
    Bill Granger recipes: Our chef succumbs to his sugar cravings with super-luxurious sweet treats

    Bill Granger's luxurious sweet treats

    Our chef loves to stop for 30 minutes to catch up on the day's gossip, while nibbling on something sweet
    London Marathon 2015: Paula Radcliffe and the mother of all goodbyes

    The mother of all goodbyes

    Paula Radcliffe's farewell to the London Marathon will be a family affair
    Everton vs Manchester United: Steven Naismith demands 'better' if Toffees are to upset the odds against United

    Steven Naismith: 'We know we must do better'

    The Everton forward explains the reasons behind club's decline this season
    Arsenal vs Chelsea: Praise to Arsene Wenger for having the courage of his convictions

    Michael Calvin's Last Word

    Praise to Wenger for having the courage of his convictions