It’s a familiar pattern, and it tends to go like this: doctor delivers diagnosis of (manageable) ailment. Patient leaves doctor’s surgery confident. Patient checks condition on the internet. In seconds, patient is convinced that death is imminent.

Knowledge is power, according to the adage, but when it comes to our health and the internet, power can be confusing. Anyone who has turned to the web for advice on a medical condition will know that that way madness lies. Instead of finding hard facts and much-needed reassurance, the unwary surfer can swiftly drown in a tidal wave of scaremongering.

But if you use it correctly, the web can offer not just information but a much more valuable currency for the newly ill or scared: companionship. Message boards (also called discussion forums) and live, real-time chatrooms are proving an invaluable source of support, information and advice for people with every kind of health problem. Most health charities now have one. Keying the words “cancer forums” into Google yields more than two million responses. The Department of Health acknowledges that the increase in the number of chatrooms over the past few years has been “significant”. And Saga reports that health is one of the most popular message subjects among users of Saga Zone, its new social networking website for the overfifties.

But as well as offering practical and emotional support, these forums have developed into an empowering tool for patients. In some cases they can also affect the prescribing habits of doctors, inform research and bring top-level medical expertise together. They have become more than online confessionals: exchanges and tips on symptoms, treatments and side-effects fill their pages.

“People sometimes become lost for words when they see their physician,” says Dr Shani Orgad, a lecturer in the department of media and communications at the London School of Economics, who has researched breast cancer forums.

“Online, they find the answers to specific questions that can be left unanswered by the doctor. For example, if [patients] are undergoing chemotherapy, the physician might tell them that they should expect to lose their hair. They go to the message board and find women describing how their hair came out suddenly during a shower. This kind of detail may sound marginal, but it is important. Women told me that message boards helped them to regain some control through these practical bits of knowledge from those who had been there.”

For those with a rare condition, sharing information can make a real difference. Certain unusual types of asthma caused by the aspergillus fungus used to be routinely treated with steroids until word got out through exchanges on the message board that the normal steroid dose could be reduced if antifungals were administered.

“Now everybody uses antifungals,” says Dr Graham Atherton, who administers the Aspergillus Trust website. “Information is filtering through much more rapidly than it used to, which probably influences the way that doctors prescribe.”

The aspergillus forum is rather unusual in that patients can have their queries answered online by a specialist in the field. And now other health charities are cottoning on to the value of allowing doctors and researchers to exchange information through their web pages and of giving them access to patients with a wide range of experiences.

“Many GPs have never heard of chronic granulomatous disorder [CGD], a severe immune deficiency in which the white blood cells do not work,” says James Robertson, who edits the CGD Research Trust website. “When they do see a case it is likely to be their first, because there are only 200 people with the condition in the UK.” For this reason, the trust provides a dedicated discussion forum for doctors and researchers on its website.

In some cases doctors and patients take their discussions “offline” in a satisfying reversal of the usual communication process. Angioma Alliance UK, a charity that started as a website to help people who suffer from a rare malformation of blood vessels in the brain, organised its first “real” meeting this summer. Not only did its forum members get to meet each other in the flesh, but they were also given access to some of the best experts in the world. In another case, two couples who made contact through the OCD-UK (obsessive-compulsive disorder) forum have ended up getting married.

Emotional support is as important as practical help. Research by the RNID, the charity for people who are deaf or hard of hearing, suggests that many of the seven million people with tinnitus have never spoken to others with the condition about the problems it causes. “People have said to us that using the message board removes the sense of isolation they experience,” says Laila Takeh, RNID’s website manager.

When John Stephenson, 30, first discovered the Epilepsy Forum, run by the National Society for Epilepsy, he spent two days online. “In the 12 years since I had the condition diagnosed, I had never met anybody else with epilepsy. My family has always been very supportive, but I think doctors should tell their patients about the forum.”

Visiting some discussion forums reveals the real value in a place where people can take their deepest fears at any time of day. The Epilepsy Forum recorded its highest traffic (216 people online) one morning last June.

“It is about control,” says Orgad. “When you have a disease your time is not your own. You can feel like a slave to the illness. One of the advantages of message boards over face-to-face support groups is that people can use them in their own time and there is no pressure to dress up and look good. Discussion forums are very intimate and also detached, anonymous spaces. People can express anxieties that they might not share with close family and friends because they don’t want people feeling sorry for them, giving them false reassurance or becoming upset themselves.”

For some, message boards can become a lifeline. Jill Wood, who visited the Macmillan Cancer Support website after her twin sister had a brain tumour diagnosed, bought her sibling a laptop so that she could join the forum.

“My sister is almost completely housebound but she has built up a wonderful network of friends who, even in their darkest hours, find the strength to reach out and help others and, by default, themselves.”

www.breastcancercare.org.uk/content.php
share.macmillan.org.uk/share
saga.co.uk/sagazone
rnid.org.uk/forums
ocdforums.org
epilepsyforum.org.uk
aspergillustrust.org.uk/patients/

Get the best from a forum

— Find a message board whose users resemble you in age, gender and medical condition.

— Decide what you want out of online messaging – some forums are stronger on emotional support, others are better for practical advice.

— To protect confidentiality, forums do not allow people to give out e-mail addresses or phone numbers, but some have a separate social networking facility.

— Check any medical advice that you receive from a forum with your doctor.

— Find a forum with plenty of traffic to ensure that you get prompt replies.

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