Over the last decade, the Internet has become an invaluable resource of health-related information, accessible by healthcare professionals and, crucially, by patients themselves. Also, the number of health-related online support groups and discussion forums has mushroomed, raising the question of whether online activity is greater for some diseases than others, and if so why.
Researchers in psychiatry from Norway, Australia and England – who had a particular interest in this question – have just published their observations of “disorder-related online discussions” from 12 Norwegian online forums for illnesses (such as obsessive compulsive disorder, breast cancer, chronic pain), including two forums specifically for ME/CFS issues. They found that ME/CFS forums had much higher numbers of registered users; for example, ‘Me-forum’ had 50.5 (per 1,000 cases in the population), while the next highest number of registered users (5.4) was for a forum on drug and alcohol dependency. Also, the number of posted messages per 1,000 cases indicated higher online activity on ME/CFS forums compared with others.
As to reasons for this, the authors give a range of possibilities – the most obvious being the particular experiences of ME/CFS patients within traditional healthcare systems (scepticism, hostility, and the possibility of misdiagnosis, etc.) which drive them to seek alternative sources of support and information.
Reference: Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study. Knudsen A et al. JRSM Short Rep 2012 May; 3(5): 32.