From ‘Journal of the Royal Society of Medicine Short Reports‘ May 2012
Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study
AK Knudsen(1,2), LV Lervik(1), SB Harvey(3,4), CMS Løvvik(1), AN Omenås(1) and A Mykletun (1,2)
(1) Department of Health Promotion and Development, Faculty of Psychology, University of Bergen, Bergen, Norway
(2) Norwegian Institute of Public Health, Division of Mental Health, Department of Public Mental Health, Bergen, Norway
(3) King's College London, Institute of Psychiatry, Department of Psychological Medicine, London, UK
(4) School of Psychiatry, University of New South Wales, Sydney, Australia
Correspondence to: AK Knudsen. Email: Ann.Knudsen@psych.uib.no
Abstract
OBJECTIVES: To examine the level of activity in online discussion forums for chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) compared to other disorders. We hypothesized the level of activity to be higher in CFS/ME online discussion forums.
DESIGN: Observational study.
SETTING: Norway, which has more than 80% household coverage in internet access, September 2009
PARTICIPANTS: Twelve Norwegian disorder-related online discussion forums
MAIN OUTCOME MEASURES: Number of registered users and number of posted messages on each discussion forum.
RESULTS: Two forums were targeted towards individuals with CFS/ME. These forums had the highest number of registered users per estimated 1,000 cases in the population (50.5 per 1,000 and 29.7 per 1,000), followed by a site for drug dependency (5.4 per 1,000). Counting the number of posted messages per 1,000 cases gave similar indications of high online activity in the CFS/ME discussion forums.
CONCLUSIONS: CFS/ME online forums had more than ten times the relative activity of any other disorder or condition related forum. This high level of activity may have multiple explanations. Individuals suffering from a stigmatized condition of unknown aetiology may use the internet to look for explanations of symptoms or to seek out alternative treatments. Internet forum activity may also be reinforced by the creation of in-group identity and pre-morbid personality traits. More knowledge on the type and quality of information provided in online forums is urgently needed.
What on earth dose this mean? How can ME and drug dependency possible be considered related conditions?, ME and MS or ME and fibromyalgia yes but ME and drug dependancy???? NO, this is really confusing. I’m sorry but this is not valid research, there is no relevance comparing a neurological illness with drug dependancy.
What on earth were they trying to prove? That people with CFS/ME have more energy than they claim to have because they spend so much time on the internet? Perhaps they spend so much time online because they are confined to their homes because they are ill. D’uh!
I think the first offered possibility “Individuals suffering from a stigmatized condition of unknown aetiology may use the internet to look for explanations of symptoms or to seek out alternative treatments ..” rings truest for me and many others I know with this condition.
If your GP has no idea how to help, I think this is a normal intelligent path of self responsibility to take.
So I don’t think “pre morbid personality traits” rings particularly true as my internet use pre illness was almost exclusively for researching and typing up work-related documents and communications and not ‘social networking’. I was very ‘work’ focused at work and did my after work socialising in the company of others face to face. Getting online was the last thing on my mind once I left the office (except when I once had a boyfriend thousands of miles away in Brazil !)
The fact is that internet use for many of us has become more difficult since becoming ill due to brain fatigue – hence our lack of ability to find meaningful work!
I think if someone bedbound with M.E. has used their last ounces of available energy to communicate socially online it indicates a personality trait that might best be termed ‘heroic’. It would be good to see that word documented in these ‘brief reports’.
Perhaps the most obvious insight that might have been used as a conclusion to this study is that people who are too ill to leave the house for regular social contact or work can get desparately lonely and hence gravitate to internet chat rooms.
How I agree with you, everyone above. It’s yet another pseudo-study investigating nothing worthwhile so that the psychos can publish yet another vacuous paper which their peers, acolytes and sychophants will drool over with relish, and brandish to support their prejudices.
Once again, comment, opinion and speculation have been employed instead of empirical science. Note, we ‘..MAY use the internet…’ – there’s no evidence, just unsubstantiated guesswork.
It could have been written by a 15 year old – an unintelligent one! Probably one ‘studying’ psychology.
I think when we are diagnosed we do search the internet but this is only to try and help ourselves understand what the hell is happening to us or how we can make ourselves feel a tad better. I also think the research by a division of mental health says it all….They think it’s in our heads!!!!
Agree with all above comments and conclude what a load of twaddle this research is.
Very poor peice of research.
They make the assumption that internet use is highest amongst young people where most people use the internet these days.
They needed control groups of house bound patients who use the internet for socialising etc not the groups they have picked.
Membership of forums is not a good indicator of activity. Non medical forums I’ve analysed have had many members who create accounds and never log in again. Or many who participate for a very short time.
12th January 2013
Thanks to Tom Kindlon, of the Irish ME/CFS Association, for pointing out on Co-Cure today that there is an exchange of letters between him and Robert J Longworth posted at comments to this report at http://shortreports.rsmjournals.com/content/3/5/32/reply#rsmshorts_el_201
They’re interesting! Well worth a read.