Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study

Abstract

ObjectivesTo 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.DesignObservational studySettingNorway, which has more than 80% household coverage in internet access, September 2009ParticipantsTwelve Norwegian disorder-related online discussion forumsMain outcome measuresNumber of registered users and number of posted messages on each discussion forumResultsTwo 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.ConclusionsCFS/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.

Specifics of chronic fatigue syndrome coping strategies identified in a French flash survey during the COVID‐19 containment

“…Our results show a specific use of social support strategy (Brigden et al, 2018;Knudsen et al, 2012) In this disease, main social support is done with peers, social networks and patients' associations (Jason et al, 2002) Thus, seek social support coping mobilised by ME/CFS to manage their illness during confinement uses (a) the same networks as usual: peers rather than professionals and (b) less direct contact with peers by phone and more Facebook ® . In addition, having a chronic disease showed an increased declaration of psychological distress during containment for people living with a LTC in France (Gandré, 2020).…”

“United We Stand”

“…First, 93% of Norwegian households have internet access (Norwegian Statistics, 2012). Second, previous research shows that online forums for ME and/or chronic fatigue syndrome have the highest numbers of registered users (relative to estimated cases), and more than 10 times the relative activity of other disorder-related forums (Knudsen et al, 2012). Third, ME is a medically contested and stigmatized low-status condition with disputed etiologies and gendered connotations.…”

Now you see it, now you don’t: A discourse view of disability and multidisciplinarity

“…However, I will note the following: Many people with ME/CFS are very, very skeptical of the language and symbols of disability, probably for the implicit and explicit links to permanence. Disability rights, wheelchairs, universal design -these are not high on the list of preferred topics in ME/CFS communities online, of which there are many (Knudsen et al, 2012). Rather, the discussion is at its loudest and most expansive when it is about etiologies, medical research, relationships with the health services, and the possibility of cure.…”